Scarlett Posted April 24, 2019 Share Posted April 24, 2019 (edited)  See update at the end of the thread. My poor friend is suffering so so bad and it doesn't seem like they are doing anything for her.  She has been to doctor after doctor. She has tried 2 different injections that are made for psoriasis but both of them caused a bad reaction in her and made things worse. Now they are on to trying a third one, but I don't think insurance has approved it yet. If anyone has knowledge of a forum somewhere that might have some advice she hasn't tried it would be appreciated. I believe this was triggered by Lymes that she contracted about 4 years ago. They knocked down the Lymes finally but this is so much worse than the lymes.  Edited January 9, 2020 by Scarlett Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted April 24, 2019 Share Posted April 24, 2019 I do not have Psoriasis. But with regards to forums, the best ones tend to be on facebook. I am on two for Lupus, one for RA, one for Sjogren's, one for Ankylosing spondylosis, and one for food allergies. All of them have good traffic and if you join, you can search for previous discussions too. None of the ones I am in are in woo territory.  In fact, that is the very strong point of facebook- easy to find folks with similar circumstances. 1 1 Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted April 24, 2019 Share Posted April 24, 2019 I have severe chronic psoriasis-- probably triggered from chronic strep I had as a child... Psoriasis is a GENETIC condition. Any treatment is a temporary patch. I've maxed out on all of the creams and have been using biologics (injections) for almost 15 years. Embrel worked the best for me-- but sadly, my body adjusted to it and it no longer works... There is a warning on the label about traumatic bone injuries not healing while on Embrel--- that was ME! (enter long story here). Humira made me VERY ILL-- like 24 hour a day flu for weeks-- BUT after only 4 injections I was clear for over a year (sickness went away about 3 weeks after stopping). Out of desperation I tried Humira again a few years ago-- I made it to 2 injections before I quit-- I was very ill again.... Stelara made my blood pressure dangerously high... Cosentyx is my current prescription (I get weepy eyes and a mild elevation in blood pressure) -- but I have a traumatic injury (shoulder) that I've been nursing since September (Surgery was in March)-- so I'm avoiding taking it if possible--- been off since November and psoriasis is just now coming back in a few areas-- so I'll probably go back on in May. --My advice would be for your friend to keep trying the biologics-- new ones are coming out all the time-- there is even a pill version now! Most manufacturers have plans for people with insurance that will cover the cost/copay... I pay $0-- to $30 per month for prescriptions that 'cost' $2500-3000 per month. 1 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted April 24, 2019 Share Posted April 24, 2019 (edited)      4 5 minutes ago, Jann in TX said: I have severe chronic psoriasis-- probably triggered from chronic strep I had as a child... Psoriasis is a GENETIC condition. Any treatment is a temporary patch. I've maxed out on all of the creams and have been using biologics (injections) for almost 15 years. Embrel worked the best for me-- but sadly, my body adjusted to it and it no longer works... There is a warning on the label about traumatic bone injuries not healing while on Embrel--- that was ME! (enter long story here). Humira made me VERY ILL-- like 24 hour a day flu for weeks-- BUT after only 4 injections I was clear for over a year (sickness went away about 3 weeks after stopping). Out of desperation I tried Humira again a few years ago-- I made it to 2 injections before I quit-- I was very ill again.... Stelara made my blood pressure dangerously high... Cosentyx is my current prescription (I get weepy eyes and a mild elevation in blood pressure) -- but I have a traumatic injury (shoulder) that I've been nursing since September (Surgery was in March)-- so I'm avoiding taking it if possible--- been off since November and psoriasis is just now coming back in a few areas-- so I'll probably go back on in May. --My advice would be for your friend to keep trying the biologics-- new ones are coming out all the time-- there is even a pill version now! Most manufacturers have plans for people with insurance that will cover the cost/copay... I pay $0-- to $30 per month for prescriptions that 'cost' $2500-3000 per month. This, As I said, I don't have it but am going through the same biologic circus. Humira worked fine for my RA and asthma (it isn't labeled for that but it did really help my asthma),  I am now on Cimzia to help with RA and AS. It did the job when I was on the starter 2 dose every 2 weeks,. Not really since I went down to one shot every two weeks. My next appointment is in early July. Right now, I can't see continuing with it past then and may need to go back to rheumatologist sooner. Edited April 24, 2019 by TravelingChris Quote Link to comment Share on other sites More sharing options...
Scarlett Posted April 24, 2019 Author Share Posted April 24, 2019 Thanks ladies. She did just tell me it is confirmed psoriatic arthritis Quote Link to comment Share on other sites More sharing options...
MaBelle Posted April 24, 2019 Share Posted April 24, 2019 I have psoriatic arthritis.  I was diagnosed when I was 25.  It's debilitating.  Every joint in my body is affected, including my jaw.  I get Remicade infusions every two months.  I've been on it for about 19 years, and had to try everything else first.  The Remicade gives me relief from the pain, stops the progression of the damage to my joints and clears up the psoriasis. The cost is heart stopping but without it I can not walk and would need a wheelchair.  With it I lead a fairly normal life and can usually move around with minimum discomfort.   Lately we are constantly battling our insurance company over payments.  Infusions can run between  $4,000 to $6,000 every two months. I hope your friend can find some relief.  I guess she knows she needs to see a good rheumatologist. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted April 24, 2019 Author Share Posted April 24, 2019 12 minutes ago, MaBelle said: I have psoriatic arthritis.  I was diagnosed when I was 25.  It's debilitating.  Every joint in my body is affected, including my jaw.  I get Remicade infusions every two months.  I've been on it for about 19 years, and had to try everything else first.  The Remicade gives me relief from the pain, stops the progression of the damage to my joints and clears up the psoriasis. The cost is heart stopping but without it I can not walk and would need a wheelchair.  With it I lead a fairly normal life and can usually move around with minimum discomfort.   Lately we are constantly battling our insurance company over payments.  Infusions can run between  $4,000 to $6,000 every two months. I hope your friend can find some relief.  I guess she knows she needs to see a good rheumatologist. Yes, she is now trying to get an appointment but it is hard to get in.  Quote Link to comment Share on other sites More sharing options...
MaBelle Posted April 24, 2019 Share Posted April 24, 2019 4 minutes ago, Scarlett said: Yes, she is now trying to get an appointment but it is hard to get in. Â I know, I got quick attention because I have docs in my family. Â I was at the beach and woke up with my wrist swollen up like a baseball. Â Saw an internist first then straight on to rheumatologist within a week. I was told not to have children as each pregnancy makes it worse. Â I had five anyway (but only three pregnancies) and it did get much worse after each birth. Â During pregnancy I had relief from all symptoms but plummeted about a week after the babies. Tell her to stick with trying to get an appointment. Â In my experience PA is too much for someone who doesn't specialize. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted April 24, 2019 Author Share Posted April 24, 2019 She told me they are going to try Taults next. Maybe she meant Taltz. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted April 24, 2019 Author Share Posted April 24, 2019 2 minutes ago, MaBelle said: I know, I got quick attention because I have docs in my family.  I was at the beach and woke up with my wrist swollen up like a baseball.  Saw an internist first then straight on to rheumatologist within a week. I was told not to have children as each pregnancy makes it worse.  I had five anyway (but only three pregnancies) and it did get much worse after each birth.  During pregnancy I had relief from all symptoms but plummeted about a week after the babies. Tell her to stick with trying to get an appointment.  In my experience PA is too much for someone who doesn't specialize. Her psoriasis is much worse than the joint pain at the moment.  She has multiple things going on though....she is overweight...and she has several hernias in her stomach that they won't fix because she is overweight. And she has very bad gut issues....she says she needs to eat gluten/sugar/dairy free which she fails at quite often and then is sick and hurting in her stomach. The internist is very worried about her weight and wants her to do the weight loss surgery....she has gained 80 pounds in a year. From the steroids I suspect. And she was already overweight.  It is just so so bad. I can't stand not being able to do anything to help her. 1 Quote Link to comment Share on other sites More sharing options...
MaBelle Posted April 25, 2019 Share Posted April 25, 2019 OMGoodness, poor thing. Â The psoriasis by itself is bad enough. Â 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 9, 2020 Author Share Posted January 9, 2020 (edited) I see this thread is almost a year old. My friend is no better. Worse. I fear she is approaching suicidal stage. I cannot express to you all how bad the psoriasis is. If you google images of it I don't see any worse than hers. It is all over her body. Her scalp. Inside her ear canal, in the corners of her eyes, all in her private. Inside her vagina. Under her breasts. Raised up nearly an inch all over her hands and elbows. NO ONE is helping her. She has been to Her regular GP who is an internist 5 dermatologists (she has tried 4 or 5 different versions of injections like Taltz---none work. They either quit working after a month or she has a severe reaction to them) endocrinologist gastroenterologist Immunologist Wound Doctor Edited to add the ones I couldn't remember. She has been to the ER multiple times in the last several years when the pain gets so bad she can't stand it. The last trip to ER she got the same doctor she saw about a year ago and he asked her if anyone had suggested she go to a wound doctor for the secondary infections.  So today she went to see a wound doctor. They told her they couldn't help her. That she would have to take it up with the dermatologist. And as I said the dermatologist is doing nothing that works.  She has BCBS....do they provide patient advocates to help with severe cases like this? She needs something.    Edited January 9, 2020 by Scarlett 1 Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted January 9, 2020 Share Posted January 9, 2020 I am so sorry to hear about your friend. Â Can she travel to a larger city or better hospital system? Â I'm not sure where you're located. Â Â The videos here are probably wholly inadequate for her level of illness, but perhaps in conjunction with other treatments she might find something worthwhile in them. Â Quote Link to comment Share on other sites More sharing options...
scholastica Posted January 9, 2020 Share Posted January 9, 2020 (edited) She needs to get to an autoimmune specialist. ASAP. Psoriasis is an autoimmune condition. Can she get to a large university hospital? They may have more ideas and specialists, especially if it is a research hospital. She may have to travel to get help for this. Edited January 9, 2020 by scholastica 1 Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted January 9, 2020 Share Posted January 9, 2020 I'm so sorry for your friend-- I have personally been in her shoes... At its worst, my psoriasis was over 90% of my body. My sheets were a bloody mess every morning. I wore dark clothing because the plaques would crack and bleed when I moved a joint... the main part of my face was spared so I would still occasionally go out in public. It is EXTREMELY painful as your skin RIPS down through all layers. I was fortunate that I responded well to Enbrel. I was on it for 5 years before it stopped working (I was one of the first 100 patients to use it!). Humira made me violently ill (but after being on it only 6 weeks--MISERABLY ILL-- I had near full clearing for almost a year!). I've tried several other injectables...most had no positive results or very little. Cosentex was the latest one I was on-- I hope to get well enough to go back on it again soon-- I'm flaring and have LARGE plaques on arms-- in ears, eyebrows, thighs-- starting in scalp... under finger and toe nails...(too painful to have manicure or wear artificial nails!). My family (and myself) laugh when the commercials for some of these medications come on TV... when they go over the side effects they say-- Hey Mom-- that warning was because of YOU... -- Overactive T cells are to blame for psoriasis. It is a GENETIC mutation-- you cannot 'catch' it. There is lots of evidence that strep infections can be a 'trigger' (I had chronic strep as a child... go figure). Enbrel is a TNFA inhibitor... it turns that part of your T-cells off... unfortunately for me, when you experience a traumatic bone injury your body needs that type of T cell to tell the bones to heal! Like me, Scarlett's friend has to find the right inhibitor. MOST Dr's have their 'pet' medications-- ones they are familiar with or ones that they earn kickbacks by prescribing. A good Dr will work with and for the patient instead of just throwing anything at them... Drs to see would be dermatologist who specializes in psoriasis (I found one in Austin, TX)... or a rheumatologist (if her psoriasis is that severe she probably has psoriatic arthritis too...)  1 Quote Link to comment Share on other sites More sharing options...
math teacher Posted January 10, 2020 Share Posted January 10, 2020 (((Scarlett's friend))) my heart aches for her I am having good results from Taltz. I hope she can find help. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 10, 2020 Author Share Posted January 10, 2020 2 hours ago, Jann in TX said: I'm so sorry for your friend-- I have personally been in her shoes... At its worst, my psoriasis was over 90% of my body. My sheets were a bloody mess every morning. I wore dark clothing because the plaques would crack and bleed when I moved a joint... the main part of my face was spared so I would still occasionally go out in public. It is EXTREMELY painful as your skin RIPS down through all layers. I was fortunate that I responded well to Enbrel. I was on it for 5 years before it stopped working (I was one of the first 100 patients to use it!). Humira made me violently ill (but after being on it only 6 weeks--MISERABLY ILL-- I had near full clearing for almost a year!). I've tried several other injectables...most had no positive results or very little. Cosentex was the latest one I was on-- I hope to get well enough to go back on it again soon-- I'm flaring and have LARGE plaques on arms-- in ears, eyebrows, thighs-- starting in scalp... under finger and toe nails...(too painful to have manicure or wear artificial nails!). My family (and myself) laugh when the commercials for some of these medications come on TV... when they go over the side effects they say-- Hey Mom-- that warning was because of YOU... -- Overactive T cells are to blame for psoriasis. It is a GENETIC mutation-- you cannot 'catch' it. There is lots of evidence that strep infections can be a 'trigger' (I had chronic strep as a child... go figure). Enbrel is a TNFA inhibitor... it turns that part of your T-cells off... unfortunately for me, when you experience a traumatic bone injury your body needs that type of T cell to tell the bones to heal! Like me, Scarlett's friend has to find the right inhibitor. MOST Dr's have their 'pet' medications-- ones they are familiar with or ones that they earn kickbacks by prescribing. A good Dr will work with and for the patient instead of just throwing anything at them... Drs to see would be dermatologist who specializes in psoriasis (I found one in Austin, TX)... or a rheumatologist (if her psoriasis is that severe she probably has psoriatic arthritis too...)  She definitely has  psoriatic Arthritis.  I believe she has tried 4 of the drugs like Taltz. She has been to 5 dermaologists.  Tonight she says she is going to call BCBS to see if they will cover Mayo Clinic.  1 Quote Link to comment Share on other sites More sharing options...
MaBelle Posted January 10, 2020 Share Posted January 10, 2020 Has anyone suggested Remicade? Â Quote Link to comment Share on other sites More sharing options...
geodob Posted January 12, 2020 Share Posted January 12, 2020 Something that your friend might consider, is Plasmapherisis ? This filters the Plasma from the blood, which also removes all Antigens from the blood. With Psoriatic Arthritis, the common antigen is HLA-B27. This would very likely, provide her with relief for some time. Though I'll add a link to a research article. Where Psoriatic Arthritis was treated with DF Plasmapherisis (Double Filtration). Which actually resulted in permanent remission.https://www.omicsonline.org/open-access/successful-treatment-of-severe-psoriatic-arthritis-and-psoriasis-2155-9899.1000222.php?aid=27174 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 13, 2020 Author Share Posted January 13, 2020 On 1/9/2020 at 11:04 PM, MaBelle said: Has anyone suggested Remicade? Â I will ask. Â Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 13, 2020 Author Share Posted January 13, 2020 On 1/12/2020 at 6:04 AM, geodob said: Something that your friend might consider, is Plasmapherisis ? This filters the Plasma from the blood, which also removes all Antigens from the blood. With Psoriatic Arthritis, the common antigen is HLA-B27. This would very likely, provide her with relief for some time. Though I'll add a link to a research article. Where Psoriatic Arthritis was treated with DF Plasmapherisis (Double Filtration). Which actually resulted in permanent remission.https://www.omicsonline.org/open-access/successful-treatment-of-severe-psoriatic-arthritis-and-psoriasis-2155-9899.1000222.php?aid=27174 Wow,  thank you,  I am going to show her this.  Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 13, 2020 Author Share Posted January 13, 2020 (edited) She is in bad shape and they had to go on a 9 hour road trip to a funeral. Â On the way home they spent the night in a hotel and she woke up even worse. Â She is a bad way. Â Her dermatologist told her to go to the ER. She sould be there now. Â They are in a big city about 5 hours from home. Â Edited January 13, 2020 by Scarlett Quote Link to comment Share on other sites More sharing options...
scholastica Posted January 13, 2020 Share Posted January 13, 2020 3 minutes ago, Scarlett said: She is in bad shape and they had to go on a 9 hour road trip to a funeral. Â On the way home they spent the night in a hotel and she woke up even worse. Â She is a bad way. Â Her dermatologist told her to go to the ER. She would be there now. Â They are in a big city about 5 hours from home. Â Praying for her now. 1 Quote Link to comment Share on other sites More sharing options...
Lang Syne Boardie Posted January 13, 2020 Share Posted January 13, 2020 (edited) Scarlett, psoriatic arthritis is in Dr. Fuhrman's wheelhouse; that's one of the conditions for which his dietary program can bring about near-miraculous improvement. I hope and pray she is helped by the ER and able to consider this option in the future. If it "worked" - at least for remission - the relief would be dramatic and fast, like within a couple of months. I can't imagine the diet would interfere with any medications or protocols - there would probably be absolutely nothing to lose by trying. (Of course, she'd need to make any changes under her doctor's supervision.) Edited January 13, 2020 by Lang Syne Boardie 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 14, 2020 Author Share Posted January 14, 2020 They admitted her to the hospital.  That is a first.  I pray something comes of this.  I wish she wasn’t so far from home.  2 Quote Link to comment Share on other sites More sharing options...
mmasc Posted January 14, 2020 Share Posted January 14, 2020 1 hour ago, Scarlett said: They admitted her to the hospital.  That is a first.  I pray something comes of this.  I wish she wasn’t so far from home.  I’m sorry for your friend. But maybe being so far from home is a good thing with this? Maybe a new set of doctors is exactly what she needs right now. Praying she finds help and relief. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 14, 2020 Author Share Posted January 14, 2020 Just now, mmasc said: I’m sorry for your friend. But maybe being so far from home is a good thing with this? Maybe a new set of doctors is exactly what she needs right now. Praying she finds help and relief. That crossed my mind.  We can only hope. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 14, 2020 Author Share Posted January 14, 2020 I was finally able to talk to her.  I forgot that she has family in Dallas so that is a big relief, so her husband has support.  They are taking her condition VERY seriously and I am super glad she is in the hospital tonight getting very good care.  She said multiple people have looked her over carefully with gloves and one of the first nurses said ‘get her yeast infection medicine immediately’. My friend is so covered in psoriasis she had no idea she had n yeast infection too.  She was crying and telling me she is so thankful for me and doesn’t know what she would have done without me and another friend.......which made me feel weird because I don’t feel like I do much for her but she said my moral support is invaluable.  Dont ever underestimate Your value as a friend.  3 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 17, 2020 Author Share Posted January 17, 2020 Update on my friend.  They have been AMAZING to her this week.  Yes, she is still hospitalized.  She has had one specialist after another meeting with her this week. The specialist wants her to come back to Dallas to see him...she said she would love to if her insurance will pay....he said well we willl check on that but we also want to place you in a clinical trial. There is so much mor.e. But she is being cared for so well.  She said her pain level is DOWN to a 7 now.   I am not a sue happy person but I do think she should sue the crap,out of the doctors in OK.  The WOUND doctor on Thursday told her there was nothing he could do for her.  By Monday she was admitted and they were pumping her full of antibiotics and steroids and pain meds because they feared she was septic which can kill you.  5 Quote Link to comment Share on other sites More sharing options...
Kanin Posted January 17, 2020 Share Posted January 17, 2020 Wow. I can't believe her local doctors said there was nothing they could do, and sent her on her way. Thank goodness she ended up in that hospital!! So glad she is getting good care now. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 17, 2020 Author Share Posted January 17, 2020 1 minute ago, Mainer said: Wow. I can't believe her local doctors said there was nothing they could do, and sent her on her way. Thank goodness she ended up in that hospital!! So glad she is getting good care now. She is still in the hospital. She will be there until Sunday. Today her heart rate was 35 and they did an ekg and now they are calling in a heart specialist. 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 17, 2020 Author Share Posted January 17, 2020 2 minutes ago, Seasider too said:  Oh my. That’s awful. Her local doctors totally failed her. Multiple. 5 Dermatologists. Well, 4, the 5th one she has only seen once and he is the one who sent her to the ER when she called from out of state....and she likes him and thinks he is willing to do what is necessary but not sure he has the experience for such a case as hers. But anyway, 4 dermatologists, a rheumatologist, an immunologist, endocrinologist, several ER visits (like 4 visits in a year), and a wound doctor. All of them just pushed her on to someone else. Makes. Me. So Angry.  1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 17, 2020 Share Posted January 17, 2020 Thank you for continuing to update! I am glad they are expediting evaluation by bringing in rounds of specialists—so much easier when she is inpatient! 2 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 18, 2020 Author Share Posted January 18, 2020 They just transferred her to ICU. 4 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted January 18, 2020 Share Posted January 18, 2020 I am so sorry, Scarlett. hopefully, everything will go better for her. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 18, 2020 Author Share Posted January 18, 2020 High bp, low heart rate.  They aren’t sure what is going on. 2 Quote Link to comment Share on other sites More sharing options...
mominco Posted January 18, 2020 Share Posted January 18, 2020 Hope your friend gets some answers.Poor thing she has been suffering so much! Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted January 19, 2020 Share Posted January 19, 2020 On 1/10/2020 at 5:15 AM, Scarlett said: I see this thread is almost a year old. My friend is no better. Worse. I fear she is approaching suicidal stage. I cannot express to you all how bad the psoriasis is. If you google images of it I don't see any worse than hers. It is all over her body. Her scalp. Inside her ear canal, in the corners of her eyes, all in her private. Inside her vagina. Under her breasts. Raised up nearly an inch all over her hands and elbows. NO ONE is helping her. She has been to Her regular GP who is an internist 5 dermatologists (she has tried 4 or 5 different versions of injections like Taltz---none work. They either quit working after a month or she has a severe reaction to them) endocrinologist gastroenterologist Immunologist Wound Doctor Edited to add the ones I couldn't remember. She has been to the ER multiple times in the last several years when the pain gets so bad she can't stand it. The last trip to ER she got the same doctor she saw about a year ago and he asked her if anyone had suggested she go to a wound doctor for the secondary infections.  So today she went to see a wound doctor. They told her they couldn't help her. That she would have to take it up with the dermatologist. And as I said the dermatologist is doing nothing that works.  She has BCBS....do they provide patient advocates to help with severe cases like this? She needs something.    I’m not usually a natural therapy person but I have a friend whose kid had all over patches after a dose of antibiotics.  She went to a naturopath who put him on some expensive herbal stuff and made them go completely dairy and gluten free.  It cleared up 100pc i realise without the specific names Of the herbs that may not be helpful but the gluten dairy free part may help if she hasn’t already done that.  Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted January 19, 2020 Share Posted January 19, 2020 I just realised the thread is gone way beyond the original thing I was replying to. I’m going to leave it there in case it’s helpful long time but sounds like the situation is much more acute now. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted January 21, 2020 Share Posted January 21, 2020 Scarlett--how is your friend? Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 21, 2020 Author Share Posted January 21, 2020 9 hours ago, Harriet Vane said: Scarlett--how is your friend? She is still in the hospital. Yesterday the doctor did a stress test and a nuclear stress test and he said he heart rate never got up to where it should. Â She said now they are talking a stent...more testing today. Â Â Her skin is much improved. Â She has lost 40 lbs since being admitted....mostly from the inflammation. Â She is afraid once they stop the steroids she will go right back to where she was a week ago. Â I think they will have her on the Skyriza by then. Â 2 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted January 21, 2020 Share Posted January 21, 2020 2 hours ago, Scarlett said: She is still in the hospital. Yesterday the doctor did a stress test and a nuclear stress test and he said he heart rate never got up to where it should. Â She said now they are talking a stent...more testing today. Â Â Her skin is much improved. Â She has lost 40 lbs since being admitted....mostly from the inflammation. Â She is afraid once they stop the steroids she will go right back to where she was a week ago. Â I think they will have her on the Skyriza by then. Â They certainly should not dead stop the steroids and it takes weeks to months for biologics to normally work as well as they will. Quote Link to comment Share on other sites More sharing options...
scholastica Posted January 21, 2020 Share Posted January 21, 2020 Thank you for updating. It sounds like she’s in good hands. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 21, 2020 Author Share Posted January 21, 2020 21 minutes ago, TravelingChris said: They certainly should not dead stop the steroids and it takes weeks to months for biologics to normally work as well as they will. Right.  So she is afraid she is going to be back suffering like she was.  But I don’t think this group of doctors will allow that.  1 Quote Link to comment Share on other sites More sharing options...
J-rap Posted January 21, 2020 Share Posted January 21, 2020 I feel so sorry for your friend.  It sounds like other things might be at play besides PA, but hopefully as they unravel everything, doctors will be able to start helping her.  I know very little about PA, even though my brother has had it for many years.  He began having symptoms in his late 20's, but it took several years for it to fully evolve (like a lot of auto immune conditions, from what I understand) and be diagnosed.  He's fortunate in that he happens to work at a great hospital, so he has access to good specialists and treatments.  Even then, there's only so much you can do.  As others have said, he'll find one treatment that helps for awhile, and over time it tends to lose its effect.  But, without meds, he would be so much worse.  As is, he can continue working and doing many things he loves to do.  I don't know the meds that have helped him the most.  It seems like the hospital he's at is always coming up with new things to try.  He has said that when it's really bad, the thing that helps best apart from meds is lots of warm sunshine.  Being he is in a northern climate, he would use sun lamps in the winter.  That helped so very much, but then he developed melanoma so it's a catch 22.  He still tries to spend as much time in the warm sunshine as possible (with lots of sun screen!) and it really does seem to help alleviate some symptoms.  Because of his job, he's traveled a lot and has had the opportunity to try lots of natural treatments too (used in other parts of the world).  He discovered that soaking in naturally heated salt/mineral water also tends to help.  I wonder if he's tried to re-create that at home.  Obviously the treatment of warm salt water and sunshine isn't a remedy, but they do seem to help alleviate symptoms.  1 Quote Link to comment Share on other sites More sharing options...
geodob Posted January 22, 2020 Share Posted January 22, 2020 Scarlet, have they considered Plasmapherisis to remove the antigens? Also a simple blood test for the HLA-B27 antigen. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 22, 2020 Author Share Posted January 22, 2020 1 hour ago, geodob said: Scarlet, have they considered Plasmapherisis to remove the antigens? Also a simple blood test for the HLA-B27 antigen. Honestly until she was admitted to a TX hospital 10 days ago she had received very inferior and unacceptable medical care.  I think they had tried 4 biologics  and they either stopped working after 2 months or she had a bad reaction to them.   Yesterday the cardiologist did another test looking for blockage to explain her low heart rate....it was negative.  He said the only other test he could do is a heart cath but that poses more risk to her in her current state than waiting....so he feels IF there is a blockage that it is not critical compared to the other things going on.   So I am fairly certain she will be released today.  She is going to get with that rheumatologist today and get a plan....see what her insurance says etc. The  cardiologist wants to see her again and said he will work with the rheumatologist to coordinate appointments since she is so far away.  3 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 22, 2020 Author Share Posted January 22, 2020 Spoke too soon.  At 3:00 a.m her hr went back to 30 and it’s the going up.  So they won’t release her, and they have scheduled a heart cath for tomorrow. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 22, 2020 Author Share Posted January 22, 2020 I am a little confused....she is telling me the cardiologist is saying she has bradycardia and ventricular tachycardia. Â Is that possible? Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 23, 2020 Share Posted January 23, 2020 1 hour ago, Scarlett said: I am a little confused....she is telling me the cardiologist is saying she has bradycardia and ventricular tachycardia. Â Is that possible? Yes. Those two are associated. Quote Link to comment Share on other sites More sharing options...
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