Serious Enbrel problems...

[MrDirty]

Ok this is my first post on here, I'm glad I found this site. I've been having some serious problems and I'm not sure if it's Enbrel related or not. Let me start at the beginning. I developed P early in my life, it started with my ears splitting at the bottoms. As I got older it started showing up on my scalp, my face, and various other places on my body. About 4 years ago I started to have wrist problems where they would be sore every now and then. As time went I tried every shampoo and OTC medicine I could get my hands on. Nothing worked and I learned the hard way I'm alergic to coal tar. I heard about Enbrel around 2 years ago and was pumped to get to try it. I was 21 at the time and the P was a real downer and the PA was getting worse. I had no insurance and was rejected by the Enliven program (I think that was the one) to get free Enbrel. On my 4th try they finally approved me for it and my Derm gave me a script for the 50x2 amount. This was almost 11 months ago when I got approved. Since then I've had to go off Enbrel 3 times. I would pick up various "bugs" and just couldn't recover. I've always had an amazing immune system but was aware this was a side effect. The first time was a bad lung infection. The second was just a cold. The third was a bad sinus infection. Each time I went off Enbrel I went through what I would describe as withdrawals, like i was physically addicted to it. 2-3 days after stopping an INTENSE itch would cover my body from head to toe for about a week. I learned through experimentation that Allegra worked well for treating the itch. After the itch week went by my P and PA would RAGE and I'd begin to stiffen up worst than I ever had. The first two times I went back on the Enbrel and it got much better again very fast. Now the 3rd time I went off it I got realllllly sick and took some time to recover. I decided to take a little more time off the Enbrel to be "unsick" for a while. I made it past the itch with bendryl (sp?) because I couldn't afford another Dr. visist and the allegra again, and I made it past the initail PA flare. Then it got worse. My PA turned from a every couple days thing to an everday all day and night thing. The PA got to the point where it overshadowed the P to where I'd beg to be covered in P and not have the PA. So I decided to go back on the Enbrel. It's been about 3 months back on and the PA is worse then it has ever been. In the last month I've started to get numbness in my left hand and foot (which is the side the PA is worse on) adn the pain has gotten so bad it just kills in my left wrist. Sunday at work I picked up a bottle and a pain shot through my fingers and wrist and hasn't really gone away since then. I have an appointment for a Rheumatologist on the 17th of next month, the soonest I could get it. I went and saw 3 other regular doctors because 1. I needed some help fast and 2. a R wouldn't see me without a referral. None of the docs are familiar at all with Enbrel. I've also experienced the problem where my skin has developed a resistance to taking the shots. It used to be easy to do the shots and the medicince slid right in with no bumps or pain. Now I have do inject the needle multipule times around the same area to find a spot that will "accept" it. Has anyone had anything like this experience?? It's so depressing to see people on here having such great experiences with Enbrel (that may sound bad, I'm very happy for them :) ) It just sucks mine isnt' the same. I play guitar and it's my life and I fear I may totally lose the ability to play! Looking back to what my problem was 2 years ago it's WAY worse now, it's like im 80 years old. I dont' know if the Enbrel caused it or just awakened it. Or maybe it just would have gotten worse at this point in my life...I just dont' know?

[ouchyk]

Hi MrDirty,

Welcome to the boards. I think there are a few of us here that enbrel has " worn off " after a while. It was never 100% relief for me, however coupled with other medications did work for about a year and has recently lost it's efficiency. I so understand where your coming from, I wish I had an answer to why this is happening to you, but I don't. I guess we have really smart immune systems and they figured out what we were up to with enbrel..

I also had my fair share of ear infections and colds while on it, but I think that had to do with teaching very young children and perhaps I would have had these things happen anyway? Who knows.

My toes have been numb and tingling also, I told my rheumy at my last appt and he checked them out only to see they were swollen and he chalked it up to that. I have been in pain and found the only thing that really helped me was prednisone and that's not a great option. I was given the choice to add MTX ( which I cannot do ) or switch to humira or remicade. I've opted for Humira at this point knowing that I can switch to remicade if need be.

Psoriasis is very minimal on my body so for that I am very grateful. Do you think you could get to a derm?

My suggestion to you, would be to ask to be put on a cancellation list for your rheumy, while stressing the fact that your in pain and need help. Also, there are many of us who take pain meds to take that edge off so we can at least cope. No one should suffer with pain.



Hang in there.
Karen

[patti2957]

chicken or egg...
In other posts I've seen where going off Enbrel makes "PA Mad," as ttiben said. I experienced the same reaction to going off prenisone and meds. Is that because the meds are doing such a good job we don't realize it until we stop? Or, is it truly a rebound?
On mtx I've already had to viral infections but not serious enough to go off the meds, both sinus/throat related. I can live with them although I'd rather feel good on the days when I'm not sleeping off the mtx.
Why don't you try putting a call in to the nurse for your RH; sometimes they'll call and answer questions; that way, if they think it's serious enough the doc will get involved.
Best of luck and please let us know how you're doing. I'm in my 40's and think it's horrible to shuffle around like an elderly person but I hate to see such young kids having to battle this.
take care,
Patti

[MichaelaCFP]

Greetings,

About 5 weeks ago, I was taken off of Methotrexate and my P (which I have had for 30 years) returned. In addition, PA came with this. I had never sufferred from PA before and I agree that it really brought me down (due to the pain.) I started Enbrel this past Monday.


To answer your question (based on what I know now.) If I had minimal insurance but could afford some ongoing treatment - I'd probobly take Soriatane in combination with PUVA. I used this combination during the last two years (years 17 & 18) of my Puva treatments. It worked much quicker than Puva alone and provided a quicker response. Unfortunately, I started to develop skin cancers (non malignant) and it was suggested that I discontinue PUVA. I did so 7 years ago and have not had any skin cancers over the last 4 years. The skin cancers came from years of puva not just the last two years.

The reason I would look at this route is that medical breakthroughs are occuring at a much more frequent basis today and the PUVA and Soriatane could be replaced with something else a few years down the road.

Please understand that everyone's immune system is different and that was the best remedy for me.

Michael

[JesseLou]

Have you ever tried Methotrexate?

[misales]

the lung infection you mentioned. I'm curious. I ended up with pleurisy for a good week and in my opinion it was enbrel related. That was the lung infection from hell. I never took enbrel again after that.

[Heide]

Enliven called me just this week and asked how I am doing on the Enbrel. They were surprised when I told them I have not used it since April 2005. It mad my pa much worse and my finger joints swelled so bad I could not close my hand and the pain was increasing every week. My Ruemy said I should stop as it definitly was not for me. This is a well known doctor from the Mayo Clinic in Rochester MN who has written papers on pa for the medical socity. So this will be reported to the Enbrel people. It is not for everyone and all the advertising is not true. Try to get to a good doctor and use your own good judgement. God Be With You Elaine

[RichJ]

hi mrdirty,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good day all

richard