Surgery for Psoriatic Arthritis

[bamagirl54]

Hi Everyone,

I am new to this site, and wanted to know if anyone has developed arthritis as a result of their psoriasis. I have horrible pain in many of my joints. I have already had knee surgery to relieve the swelling and inflammation (I could barely walk). I am now scheduled to have surgery on my right elbow to transpose my ulna nerve. I am losing feeling in my right hand and I can no longer grip anything with the same strength that I used to. Has anyone else had these problems? I am so terrified (as is my husband) that one surgery will continue to just lead to another. I am only 27 years old!

Thanks for listening,
Fran

[PJ Leary]

Hi Fran,

I can understand your concerns, and you have found a good and safe place here for support and help. Many people with psoriatic arthritis post here, and they will help you. I am so sorry to learn of your surgeries. I have not been so unlucky as you with the pa.

Though you are young for pa, you also know by now that it is not really that uncommon. I began having problems with it in my early 20's, though not as severe as you have. My skin is worse than my pa usually, though as I have gotten older ( 42 now ), the pa has gradually gotten worse.

As a result, I decided to move to a more temperate climate than the coast of Maine had to offer. Am in the Carolinas now, and my pa discomfort has greatly diminished. Still have it, but only use a cane and meds for about a month or two here, and then not all of the time.

It sounds like you are a smart lady, and considering your current situation, your concerns are justified. It sounds like you have a supportive husband. Many of us have found that our spouses offer support and love that is unparralled. I wish you the same. Remeber to keep him informed and involved so that he can help you when you need it.

That has rung so true in my own life most very recently. My dear husband is still nursing me through an extremely difficult time, as bad as it gets with any kind of psoriasis according to my fabulous Dr. I am sure I would not be posting here now if not for his loving care and intelligent advocacy and help these past few weeks.

Good luck, and a sincere welcome to the board.

Regards,

PJ Leary

[LynneHella]

Welcome, Fran.

I have P and PA (the P is not bad but the PA has me worried as well). Has your dr tried any anti-inflammatories for your PA? Have you done any PT?

There are a lot of good anti-inflammatories out there. If one anti-inflammatory doesn't work, try another. Also, there are drugs called DMARD's (Disease Modifying Anti-Rhuematic Drugs) that will actually slow the progression of the disease (which obviously surgery won't do).

If your doctor hasn't tried these options with you or hasn't discussed them with you, I would bring them up to him/her and then ask why they weren't presented as options! Surgery should always be the last resort. Even if surgery is the only option left for a particular joint, I would ask about the anti-inflammatories or DMARD's so that it doesn't progress to more joints and future surgeries.

I hope you keep us updated and I wish you the best of luck!
Lynne

[surfrat45]

Hi all...I've read several people ask for help with Psoriatic Arthritis.... I'm 24, and had P since I was 9, and then got PA when I was 13. I was finally put on Enbrel when I was 22, and about 28 hours after taking the first shot, my Arthritis was almost non-existant. Enbrel hasn't done much to help my P, but the Arthritis is a non-factor now in my life. I can even crouch down like a catcher, which I hadn't been able to do for years. I've gone as long as 4 weeks without taking Enbrel without feeling effects, and I also take 7.5mg of Mobic (anti-inflammatory) maybe once a week. My Doc is ok with this. She says for me to take Enbrel now once a week, and use the anti-inflammatory as needed. Sometimes I forget to take the Enbrel because I forget because I don't get stiff. Now, if I could just kill this damn P!

[Maud]

Hi there,

I'm British, living in London and I hope you don't mind me joining your website!
I contracted Psoriatic Arthritis last year. It began with itchy hands, I had never suffered with psoriasis before. The pains in my joints quickly followed and as the weeks/months went by I practically lost all mobility, was more or less bed bound while I waited five months for a hospital appointment. In the end I saw a consultant privately to speed things up. The horrible thing about this illness is it's relatively rare and so to friends an family it's all a bit of a mystery and I can't help feeling quite alone at times. I keep thinking that if this nasty thing suddenly appeared from nowhere there's a chance it might just as suddenly disappear.

[cpower]

Hello Fran, (and welcome Brit)
I had the same symptoms as you. I couldn't even hold a dinner plate. My Rhemy put me on Methotrexate. I have been on it for 2 months now and the strength is back in my hands and my swelling is nearly completely gone.

I know every case is different, but I am with LynneHella, I would hope that your Dr. tried all the meds out there before surgery! If he didn't, get a second opinion! The first Dr I had wanted to fuse my thumbs at the lowest joint so I would be able to pick things up. As it turns out the meds took care of it.

Good luck!

[Zwijndrecht]

Fran,
Do whatever you are able to get a disease modifying drug like methotrexate or embrel or remicade....they will stop the degeneration if they work...no degeneration, no new surgeries.

You have already much other good advice. Everyone here is here to help.

good luck and God bless.

[bamagirl54]

Thank you so much to everyone who posted a reply. I am overwhelmed at the outpouring of concern and well wishes that have been sent my way. It is amazing how much better I feel knowing that I am not the only person out there with such health issues.

To all who suggested trying different medications, I have just about tried everything that is available. I had some success with Bextra (anti-inflammatory), but I am now off of it since my husband and I are ready to attempt to start a family. I have not tried Methotrexate or any of the related medications out of fear that they could compromise my fertility.

Although I know it is not good for me, I have found that sun exposure is the best way for me to control my skin, even though it does not completely correct it. Even my dermatologist recommends that I get in the tanning beds!

Once again, thank you so much for your care and concern. I am so happy that I discovered you all. I look forward to chatting with y'all in the future.

Heartfelt Thanks,
Fran

[LynneHella]

Hi, Fran:

First of all, GOOD FOR YOU! I think it's wonderful that you want to start a family. Too many people would be so bogged down in their own problems that they wouldn't have the strength to do something as rewarding as starting a family.

However, in light of that, I'm sure your Rheumy would agree that starting any kind of anti-inflammatory would be risky. And I think that DMARD's are probably completely out of the question.

So, it sounds like you are making the best choices for you and your (future) family. Once you start that family and you're free to start some DMARD's, ask what's new and improved...There are new drugs being approved by the FDA every month for treatment of PA. Hopefully, they'll have found something that works for you by then....

Stay strong and optomistic and you and your husband can overcome anything!

Lynne

[pennylockhart]

good luck, Fran. Don't have surgery unless it's absolutely necessary. That being said, I have had psoriasis since I was 25 (I'm now 52). While living in NYC, I was hospitalized at Columbia/Presbyterian four times, with a whole ward of scaly folks. This was back in the '80s and our treatment involved daily UVA/B light, soaks in a tarry kind of bath oil, various hydrocortisone creams, and either Bakers P&S or Drithoscalp in the hair. All this stuff was accompanied by vast quantities of Eucerin cream (if you have never used it, it's like Crisco). I stayed 3 weeks, except for one visit when I had to stay 5 weeks before I was OK. Psoriasis has been OK since then until I went off Enbrel.

I was diagnosed with psoriatic arthritis between 4-5 years ago. Easy diagnosis b/c fingers look like sausages. I got worse pretty quickly and my doc put me on Arava (oral DMARD) in late 2000. I started to complain of fatigue about that time, and for a while, fatigue bothered me LOTS more than PA.

Arava didn't slow it down so I went on Enbrel in late 2001 and added methotrexate a couple months later. I lost my job in early 2002 and it was actually a load off my mind, since I picked up every URI and sinusitis that came down the pike. I didn't think the Enbrel helped that much and the literature even says 50% of the people who take it don't get relief. So when my husband's health insurer told me that I must pay 1/4 of the cost for the Enbrel (my share is $300 per month), I decided I wanted to go off it. It wasn't always convenient to get the shots (couldn't get up the nerve to do it myself) so I quit taking it in October 2002.

I learned in April 2003 that I can't qualify for trial of Abbott Labs' Humera because I have already taken Enbrel. Does anyone know about Amevive? My rheumatologist recommended it; it is completely covered by insurance b/c it has to be administered in a dermatologist's office.

Secondly, has anyone here been to Parker Hughes Clinic in Minnesota? They specialize in autoimmune diseases. I have an appt set up for June.

Does anyone know about a practice in the D.C./Maryland area that also specializes? I read somewhere that all 9 docs in that practice were highly recommended by Washingtonian magazine and that's an incredible thing.

The climate here in Chicago doesn't help, of course. Wet cold and damp heat, when what I need is a hot, dry climate. I will spend next winter somewhere in the Caribbean, for sure!!

P.S. I used to be very active, either walking 4 miles a day or doing Superslow weight lifting. Since September 2000 I haven't felt like doing anything, except when I'm on vacation in a comfortable climate. Then I feel more like more old self. Otherwise, I feel too tired to do much.

[ladyandy]

I'm sorry to hear that you seem to have a relatively aggressive case of PA, but you are lucky in one way to have the good fortune to have it when more progress is being made in effective treatments than at any time I can recall.

I do understand your concern about medications when you are considering having a family, and you are very right that methotrexate is absolutely counterindicated for anyone (MALE OR FEMALE) considering having a child, as it can cause spontaneous abortion and/or deformities. HOWEVER, if I were you, I would seriously discuss other DMARD options including the biologics (Enbrel, Remicade, Humira, etc) with a rheumatologist.

Speaking of rheumatologists, you did not mention if you are consulting the rheumatologist yet. This is the specialty concerned specifically with any diseases of the joints, particularly any form of arthritis, including PA, and would be my first choice of practitioner to oversee the treatment of any patient with aggressive PA.

Yes, I have had surgery due to my PA, and probably will have more down the road. I have had two total knee replacements and one total hip replacement, one wrist tenosynovectomy, one arthroscopic surgery of the knee done prior to my replacements, and have the disease in all my joints, so yes, I can see more appointments with the surgeon in my future.

However, for my conservative day-to-day treatment of my PA progression, control of my disease, and alleviation of symptoms and signs, I use my rheumatologist. When he advises surgery, he recommends a specialist surgeon for the job and oversees me before, during, and after the surgery as well as the surgeon.

As to the use of antiinflammatory drugs (the NSAIDs, whether COX-2 specific or not, including Bextra, Vioxx, Celebrex, etc), these drugs are ONLY for SYMPTOM RELIEF. They do NOTHING to control the underlying disease progress and should not be expected to help for longterm control of the disease.

For that, you need a DMARD (disease modifying antirheumatic drug). Again, since you are attempting to conceive a child, I would discuss your options for disease control with a rheumatologist. Although usually prednisone is counterindicated for anyone with psoriasis of the skin, because it may cause a bad rebound once discontinued, it is possible a cautious program of prednisone may be a recommendation to consider (IF the rheumatologist suggests it), as this is one drug they usually do allow during pregnancy.

I personally would also put a deadline on how long you allow your disease to progress if it is indeed very aggressive before you decide to hold off on having a child long enough to get the PA under control with a good DMARD. Again, I would discuss this with your own rheumatologist, but another option to consider might be to use methotrexate for example for a limited period of time, discontinue it for 6 months after getting your disease under control, then start to try to conceive again. Just another option...

Of course, your best course of action is to discuss this all with the rheumatologist in detail. I assure you you will not be the first to come up with this set of decisions and a good rheumy should be very helpful to you in making them.

Good luck!

[bamagirl54]

Hi Ladyandy and Everyone,

I do have a rheumy (hehe, I am still getting used to the abbreviations) that I see on a regular basis. She has suggested Enbrel, but I am not ready to begin injecting myself weekly, or having my husband do it. It seems that every medication I have tried has not really had an effect on me. Granted, I have not tried a DMARD, but I am really scared of being on any medication while trying to conceive. My husband and I are really excited about starting a family, and I want to go ahead and start one while I am still young. I figure that once I am done having children, I will be able to take the stronger medications out there.

I was in a drug trial a couple of years ago that did wonders for my skin. It was a weekly injection. So far, it still isn't FDA approved. My derm says that it is still a few years away.

Does anyone know if you get your P under control if that will improve the symptoms of PA? I know that it is all tied in to the immmune system. The drug trial that I was in had something to do with suppressing the immune system. However, I wasn't diagnosed with PA until about a year after that.

Also, are there new topical medications for P? I have P all over my body, so I need something that is easily applied in large quantities. My derm prescribed Derma-Smooth for awhile, but I am out of it. I will be seeing him again soon and wanted to know if there is any new medications that I can discuss with my derm.

[PJ Leary]

Hi Fran,

You've gotten excellent advice about treatment options at this time in your life, I'll add some basic topical information at the end.

However, I would like to address the issue of your desire tio begin a family. I think that you are wize to be very cautious. After all, we are really only of child bearing age for a short period of our lives, while most of us have p for our whole lives.

While having children is certainly not for everyone, having a family has been richly rewarding in my own life. I certainly made sacrifices to my health, and treatments, during those years. However, parenting is a series of personal sacrifices and choices. I applaud and support your desire to expand your life in this most natural of ways.

Being a parent with a chronic disease means that we need to do more planning than the rest of the folks, as LadyAndy and some others, including yourself, have mentioned. I think it was worth it. But then, we have to do a lot of things the other folks don't have to do anyways.

Foregoing treatment during this time may cause increased discomfort from the p, but you may also be one of the lucky people who experiences spontaneous remission during pregnancy.

Regards,

PJ Leary

[PJ Leary]

Hi Fran,

For the most part, topicals can be divided into two categories, those which are steroids, and those which are not.

Of the steroids, there are 7 classifications with #1 's being the strongest and #7's being the weakest.

#1 Temovate cream or ointment 0.05%
Ultravate cream or ointment 0.05%
Diprolene ointment 0.05%
Psorocon ointment 0.05%

#2 Cylocort 0.1%
Diprolene AF ointment 0.05%
Elocon ointment 0.1%
Florone ointment 0.05%
Halog cream 0.1%
Topicort cream 0.25%
Topicort gel 0.05%
Topicort ointment 0.25%

#3 Aristocort A ointment 0.1%
Cultivate ointment 0.005%
Cyclocort cream or ointment 0.1%
Halog ointment or lotion 0.1%
Topicort LP cream 0.05%

#4 Elocon cream or lotion 0.1%
Kenalog cream or ointment 0.1%
Synalar ointment 0.025%
Westcort ointment 0.2%

#5 Cordran cream 0.05%
Cultivate cream 0.05%
Locoid cream, ointment & solution 0.1%
Synalar cream 0.025%
Desowen ointment 0.05%
Westcort cream 0.2%

#6 Aclovate cream or ointment 0.05%
Aristocort creeam 0.1%
Synalar cream or solution 0.01%
Desowen cream 0.05%

#7 Hytone cream, lotion, ointment 2.5%
Pramosone cream, lotion, ointment 1.0%
Pramosone cream, lotion, ointment 2.5%



Those are the major steroids that are available. You should always ask if a generic is availble, there are many on this list that have one.

Personally, I have found that I start with the least strong medication that has an effect. Then you want to taper off as things improve by stepping down to the next level, and so on until healed and finished. I have found that it is important to do the final step properly, covering the entire previously effected areas twice daily for 48 hours after clearing. It is messy, but it works.

I also sometimes do a modified version, where I will do odds only or evens only. personally, I resopnd better to the odds.

This is intended for informational purposes only. All medications and treatment plans need to be under the supervision of a Dr. Topical steroids are potent medicationms, and if large areas of the body are involved, systemic absorbtion is indicated.

I encourage you to talk with your Dr to find what will work best for you.

Good luck,

Regards,

PJ Leary

[lil]

Hi Fran,
I'm new to this as well so bear with me.
I too have psoriatic arthritis. Hands,feet and wrists at this time.
I have not undergone any surgeries as of yet but they are asking
me to consider having some toes "fixed". Apparently the shifting of bones in my feet is causing nerves to be pinched (some
numbness and tingling). I feel this is nothing to what you have experienced and almost feel ashamed for replying. I do want to
say however, that I have had very good results with the drug
Enbrel. The only drawback I have seen is trying to avoid sick people as I have got two upper respitory infections since beginning meds in March. If you hate needles then this is not for you.
I wish you the best and hope yoiu find the feedback that you
are seeking.
Sincerely,
Michelle aka lil (member name)

[Brumby]

I too was scheduled for surgery as I have psoriatic arthritis in the distal interphalangeal joints (first finger joints next to nail). I was told they would clean the joint site of bony growth then cut out the "joint" and pin the joint together. I have the same condition in all fingers so was not looking at this as a solution. I still ride horses though I have had tack adjusted to suit my condition. I am 53 years old and not looking at surgery as a "cure". Hope you are able to find a better solution. I live in sunny Queensland, Australia and moved to a warmer climate to try to help ease the aches during the cold winter months. I constantly wear gloves to protect the sore and swollen joints.

[web63]

Surgery will not stop the pain.
PA also attackes the immune system, and the tendons leading to the joints.
Joint replacement will only solve part of the pain.
Actually there is no cure for the pain. You just deal with it, and hope the Bio drugs (REmicade, Enbrel, Humira etc...) will help us with this VERY NAST DESEASE>
Personal e-mail <pa@web63.com>

Thanks,