Are there others with Hep C and Psoriatic Arthritis?

[Babs1469]

I have felt so alone for so long long and today I just happen to come across this forum and I noticed that there are some postings with both conditions that I have? Is it possible, are there more people like me who suffer from both? I can honestly say that I have tried almost everying for both illnesses . Remicade worked wonders for my Posriatic Arthritis but I had a side effect that is not common, Muscular Distonia (sp) so I had to stop taking it. I am now on Methortexate, Humira, Arava, prenatals and steriod shots. The Methotrexate makes me sick but seems to help with the rashes. Nothing helps the pain.

I am currently not on anything for the Hep C. I have gone through several coarses of Peg Interfeuron, Riboviran and so forth, The side effects were so bad , I lost my hair, I had chills and shakes and vomiting and aches and it felt like the worst flu ever. I made it through a Year once, the other two times I had to stop the treatment because ( this is just my opinion) the doctor was sick of hearing me complain about how crappy I felt.  I have so much more to say but I'm a bit overwhelmed by actually finding this site. Dare I say, optomistic???

Well hello to anyone who is bothering to read this. I'd be forever grateful to find someone to talk to who knows what I'm going through, I'm also a great listener and would be happy to be a soulder for someone as well.  I'm not sure how I will know if anyone responds to this, I'm not great with computers, just don't tell my boss since I run several different operating systems for the Philadelphia Water Department! LOL  Hope to hear from someone soon. Have a wonderful day.

[Babs1469]

nygirl, that is a great idea about the tanning lotion, I'll mention it to my doc and see what he says. Thanks for the idea and I really hope you start feeling better too. the itch can be maddening! I'm sure you look just fine to those who love you. Personally I used to joke that I looked so bad I scared small children I am lucky that my co-workers and family understand that a scaley balding itching person is not all I actually am! I hope you are lucky enough to have great freinds and family  who support you even at your worst.  I have a real problem with, ( this is going to sound gross) picking the skin off, I don't even realize I'm doing it for everyone to see. It must be so gross for others to see.

jmjm, Just last night my rhumetologist told me that the cream was controversial and he didn't reccomend it for any length of time, I had initially gotten it from my primary because my skin was cracking and bleeding on my elbows and knees. I don't remember if he told me not to use it for any longer then needed but after talking last night and reading your post today I'm going to only use it when I start bleeded, I was told that the cream can actaully break down your skin cells making me more prone to only a thin layer of skin so it is a catch 22.

[jmjm530]

Have you tried UVB Narrow ( I think) without the PUVA ? In any event, if light seems to work, and insurance is an issue, then a light machine at home might be the way to go. Perhaps you can get some insurance reimburse but if not I'd seriously consider sacrificing if it can cut down on your drug exposure. As to  BETAMETHASONE DIPROPOIONATE, that's pretty potent stuff and I assume you are cycling it properly under a dermatologists care. Needless to say you should never use something that strong on your face except for very short periods of time guided by a derm.

[nygirl7]

After 72 weeks of interferon/riba I was left with an autoimmune disorder or two and one of them is...da da da da! eczema (we think) terrible itchy rash on my hands and legs (it used to be on my face I"m SO glad it stopped that anyways) that just looks like leprosy to me.  I'm always walking around itching itching scratching no matter how hard I try to be a grown up and not - it only lasts so long till I just give in to the temptation!

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Also I've considered going to a tanning place but
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I wouldn't really suggest that if you are like me with the skin problems........the tanning bed will dry you out really bad on top of the skin conditions and it could really aggravate it.  What I did instead was use the new self tanning moisturizing lotions (Jergens Express works FABULOUSLY) and you don't get that orange color at all.  You just put it on like regular lotion so there are no streaks or anything (just make sure you wash your hands thoroughly or the palms will turn orange I made that mistake!).  Plus instead of drying your skin out you are actually hydrating it.  People complimented my tan all summer long but I haven't been in the sun for four or five years now since whatever year I started treatment! You can find coupons for it everywhere and it's $9.99 a bottle (but I could find it all the time on sale for $7.99) much cheaper than a tanning salon.

At the height of treatment with the self tanner and my wigs (lost 80% of my hair) I think I was looking like a transvestite but I guess that was better than the emaciated bald grey skinned vampire I'd become.  A girls gotta do what a girls gotta do!

Good luck!

[Babs1469]

I did try Enbrel, It did nothing for me, The remicade was given to me over the course of a couple of hours by infusion once every 4 - 6 weeks. I felt so much better on the remicade and my rash cleared up over my entire body, I have a psoriatic rash over more then 1/2 my body, unfortunately I ended up with muscular dystonia (sp) where all my muscles froze up and I couldnt move my arms, hands, left knee and neck. Believe me when I say if I could have found a way to deal with the not moving I would have stayed on the Remicade, I felt it helped me THAT much. The Humira Is an injector pen once a week and is very painful for me it stings and I hate the pre filled pens. The Methotrexate I take by injection as well but I fill the syringe myself and I have less trouble with dealing with that shot. I have to say, before I found this site I thought I was pretty knowledgable about my illnesses but reading what you guys have to say makes me wonder just how much  more educated I need to make myself and I think I need to stop trusting in doctors so much so blindly accepting what they think. You have all opened my eyes a bit to what I need to do for myself. and I will be eternally grateful to you all for that. Lastly I take Arava by mouth, I've found that of all the ointments, gels creams, and oils Ive been on for the skin, BETAMETHASONE DIPROPOIONATE OINTMENT is the best for the cracked dry flaky painful skin and the VOLTAREN GEL is the best for pain in my wrists and ankles.I did do the PUVA ULTRAVIOLET LIGHT  Treament and it worked pretty good but I can't afford to see the  dermatologist 3 times a week at $25 a visit and at this time I cant afford to buy my own light. Also I've considered going to a tanning place but that is too $$$ for me since my husband recently lost his job and we lost our house. I'm not bitching thought seriously I know so many have it so much worse and We were able to get a great apartment and he has a job lined up for July and we are still hopeful that he will get his job back with the Police Department I just dont want anyone to think I'm a sap singing the blues ya know.  sorry I was so long winded thanks if you actually made it all the way through this post you guys ROCK!!

[jmjm530]

Just noticed you tried Remicade with (another biologic) but had a bad reaction. Don't know the nature of your reaction but Remicade, I believe is given IV, while Enbrel  and Humira I think are Sub q. Given the mix you're on, I"m sure your doctors are aware of Enbrel but curious why they didn't put you on it. Probably the most liver friendly drug in the group and in fact at one time they trialed Enbrel with interferon and riba, not to treat psoriasis but to increase the efficacy of treatment.

[jmjm530]

I am aware of the hazards of methotrexate on my liver and my hepatologist works closely with my rhuematologist it is a strugle to be sure.
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Have you tried any of the newer biologics like Enbrel. Definitely more liver friendly than methrotrexate.

[Babs1469]

I'm a bit overwhelmed, thank you all so much for taking the time, I can't tell you how much I appreciate it. I am aware of the hazards of methotrexate on my liver and my hepatologist works closely with my rhuematologist it is a strugle to be sure. AS for waiting to start a new treatment for the HCV, I'm with you 100% I'm going to wait for something new and my liver levels support this decsion. I'm lucky in that my brother is a Senior Scientist with Glaxo Smith Kline (sp) and he tries to keep me informed on what is happening with certain aspects of drug research and development. If anyone has any questions you would like me to ask him I'll do my best to relay any inquiries but I can't promise anything. It is true also that the treatment for HVC is hell on Psoriasis, that is the main reason I lost my hair, the rash in my head was so bad and I itched so much I pretty much did it to myself. Thank you all  again soooo much, It means the world to me to find others who understand and don't just pity. Have a wonderful day!

[copyman]

Hi and welcome to the forum. Sorry I can not help with the medical problems but I did want to warn you about Methortexate. This is probably one of the worse drugs for the liver, especially if you already have a liver disease like HCV . If at all possible do not take this drug for a long time. Best of luck

[HectorSF]

You mean Psoriatic Arthritis, correct? I have very mild psoriasis but I don't know anything about Psoriatic Arthritis except it is much more of a challenge then just having the skin disease. As far as treatment for Hep C, I can tell you that the PegInterferon and Ribivrin can cause a severe outbreak of psoriasis. I don't know if you experienced that when you were on treatment or not. But it is something to watch for, if you do decide to treat your HCV again in the future.

As far as treating HCV it sound like you had a very difficult time with the side effects of the medicines. Depending on the condition of your liver, you may want to wait a few years for the new meds to arrive on the market. These meds will be more effective in treating the HCV virus and you may be able to treat for a shorter time period.
Since you didn't give much information about your previous 3 treatments and how you responded, it is hard to comment on why your previous treatments failed. But I would suggest finding a good Hepatologist in the future when you decide to try treating again. The Hepatologist will be familiar with the latest treatments which is what you will need, as trying again with the same Peg Interferon and Ribivirin treatment will only give you the same results as before.

Good Luck.
Hectorsf

[lapis]

Just wanted to welcome you.  I don't have both conditions, but I do have a suggestion for you.  At the top right of the page is a box "search MedHelp", and you could type in psoriatic arthritis + Hep C, maybe you'll come up with something.  And maybe someone who does have both will check the forum and write back too.  Best of luck to you.

[fxr_rusty]

This is a great place to obtain knowledge and to vent. I am sure someone will holler at ya soon with similiar problems.  KEEP ON SMILING if ya can, but sometimes crying is good for the soul.