Just before the psoriasis developed, I had 2 emergent surgeries because my colon was so dilated that it twisted on itself twice, despite the surgeon taking out the twisted segment each time. After the second surgery, my colon stopped working altogether and felt like it was still twisting intermittently so the rest of my colon was taken out.Never had any nausea with obstructions, just severe pain. Now I have a spider’s web of scarring in my abdomen and am prone to obstruction if a loop gets stuck in the web somewhere. I developed joint pains in my hands shoulders and neck and t-spine 8 months ago which responded well to temporary steroids, but then developed migraines for the first time. Finally those were better w:meds but was then I was incredibly nauseated for about 6 mos while on Humira which didn’t seem to help much. Nausea finally better. Now on single dose Enbrel which seemed to help initially ( 1st month or 2). But Psoriasis (scalp & genital) are still progressing despite all kinds of steroid spray, etc. The psoriasis showed up 4 mos ago when a biopsy of a head lump showed psoriasis. Now, it’s all over my head. I don’t have big joint effusions, but I have stiffness and/ or pain in just about every joint, depending on how much I used that joint. They start ou stiff, loosen up for awhile and then get stiff & throb. 3 years ago, I was working full time with toe fungus being my biggest health problem (didn’t notice significant constipation if I had it).
Questions:
has anyone out there had intestinal issues similar to mine?
2)has anyone had fairly severe chronic nausea in the first year of the disease and if so, any idea what causes it?
3)has anyone had the experience of taking Enbel twice a week helping more that the usual once a week dosing most Rheumatologists recommend?
4)does this progression seem fairly rapid to you all?
Thanks! Sorry this so long but I just found this site and am so grateful to be able to get opinions from people with PSA!
No. I can’t take NSAIDS because of intestne stuff. So, I take Tramadol first, then T3 if still in pain. Also take CYM Alta but I don’t think it really helps my pain much.
No answers but I am so so sorry to hear about the things that have happened to you. And your questions are excellent ones and I'm waiting to hear the answers people have.
Wens, I surely don't have any answers for you, you surely have been through it though! Well, maybe one, and it may sound too easy, but it will be easy to try. There is a gal named Brenda Watson who does guest spots on PBS and talks about probiotics. Hers are different because they go to work in the colon rather than get burned up in stomach acid. You can watch her on youtube, and google her and order her products. It may not stop the twisting, but may help with the blockages, another thing I can recommend is Spectrazyme. My DC turned me on to those, as we get older it is harder to digest foods, because our body produces less and less acid to break down the food, and personally, my own personal belief is that many food sensitivities start when we loose these enzymes that break a certain food down for digestion. Spectrazyme has more ingredients for all food groups than any other I have ever found.
Now you know I am not a health care professional, but this surely should be worth consideration and/or a look.
Generally twice a week Enbrel is for psoriasis control. For insurance etc (US) my rheumy gets the second dose approved by the Skin doc or states its for control of psoriasis.
All that being said, I started getting a little burn (that feeling you get just before your psoriasis "blooms") and achey (that feeling you get just before a flare or when the weather changes) on day 5. Now I inject every 5 days and its working great.
All that three years? I doubt it. Us working folk are too damn stoic. I blamed it all on my broke n back for a few years and then on age (didn't have the psoriasis yet) I frankly wouldn't have gone to the rheumy if the dermatoligist who was burning off some cancer spots didn't have to help me off the table after and "suggested" I see the rheumy. He called got me in the next week because "it was serious" I had just had my tb test for my teaching certificate (haven't tough in years at that level but keep anyway) so lafter the exam had my first enbrel shot.
Anyway when you start reflecting, its been more than 3 years....... usually starts as a teen, its just that we have a different normal. I've seen adults curl up in a quivering ball with what I know to be a portion of what we consider a "good day"
You might ask about remicade for future needs, it was developed first as a gut drug, but as always with biologics don't fix what isn't completely broke
HI I have a friend who was on double doses of Enbrel for awhile. She was on and off Prednisone for quite awhile too.and
it helped so much she is down to once a week. She has a handy supply of pred to take if she starts to flare with her PPP.
Prior to diagnosis I had allergy type issues that resulted in bowel issues and projectile vomiting. Figured out quickly it was dairy. That being said after about 2 years I slowly introduced dairy back into my diet with no complications except I cannot tolerate liquid milk.
My SIL had colitis show up at 18 was put on Sulfasalizine. At 21 the colitis beccame so bad he wound up having his large colon removed and an internal pouch was made. I think he has Psoriasis . He has a patch that comes and goes on his leg. he says it is not. I know plaque psoriasis when I see it. he has it. As for symptoms of PsA fortunately he has none. That's all I can tell you about that.
In 4 years I have had 2 total TKRs . My initial diagnosis was axial and all my large joints, but my small joints are getting involved too. It is not uncommon to have what seems to be every joint hurt. When off Humira I am a wreck and every day a new joint gets involved. It sounds like your PsA is agressive. So is mine and a lot of folks on here are the same. Agressive treatment like you rheum is proposing sound like a good plan to me. The facts all point to treating PsA agressively before joint and in your case bowel damage occur. Unfortunately for you and many bowel disease is a first symptom and the arthritis portion happens after. What you are describing is typical of PsA. What about MTX? in conjuction with enbrel? Have you tried it and failed? Can't take it because of the bowel issue? MTX id fabulous for skin clearing. Being on MTX has cleare up my P and humria and a recent steriod shot has cleared up teh rest. good luck and welcome
Thanks for your input, everyone. There’s no substitute for experience and I really appreciate the opinions & suggestions.
I think the reason no one has suggested methotrexate is because my psoriasis isn’t that bad. It’s annoying, but manageable. My spine and peripheral joints are the main problem. Food sensitivities are entirely possible. The probiotic “Align”, though pretty expensive has made a huge difference. The enzyme suggestion is another good one. I have them and so far have only taken them if I start to feel obstructed but should probably be taking them more often and sill look for Spectrazyme.
Finally, I started my first week of twice a week Enbel (50 mg each time). I’ve started kind of nauseated again like I was on Humira. So, I think I’ll just have to see how it goes. The plan is to switch to Remicaid in a couple of months if the Enbrel either doesn’t work well or I can’t tolerate it. Has anyone out there had nausea with Tess drugs? I’m hoping that at least if I take Remicaid less often, maybe the nausea won’t last as long?!
Thanks again for your input.
Wens