I was diagnosed with PsA almost a year ago. I've been on Methotrexate since April (when Sulfasalazine failed). Since that wasn't enough we added Orencia Infusions in September.
Eight days after my first Orencia infusion I was diagnosed with Shingles. (I also had Shingles 2 years prior, before my diagnosis.) The Orencia was put on hold for a month and I restarted the load-up dose in October.
Yesterday I was diagnosed with Shingles AGAIN (6 days after my Orencia infusion). This time is worse than the last time!
I think that my immune system just can't handle taking two immuno-suppressors (MTX and Orencia) and I just can't keep taking them if I'm going to get Shingles every 3-4 months!
Has anyone else had trouble with recurrent Shingles? I also have a viral sinus infection so that may be what put me over the top.
Shingles vaccine maybe? I would think that you could at least try that. I’ll take any vaccine that is made; I’m terrified of getting sick. Shingles are especially awful. “Excuse me, would you like a side of pain to go with your pain?” Yikes!
Hope you are over this bout, and keeping my fingers crossed for you.
Oh my I am so sorry that must be aweful! Did your doctor think about another kind of infusion? I am on Remicade, which works for me for about 2-3 weeks without any flare up. I could not even image having shingles on top of all the other pain. Have you ever been on Enbrel or Humaria? Enbrel alone worked for me for about 4 years before I became immune to it.
I hope they get your meds figured out and I will be praying for you. Please keep us up-to-date. I was thankful when I found this site about a month ago, it makes me feel alittle better just knowing I am not alone and others understand and don't say things like "Yea my grandmother had arthristis in her knees and she could tell when it was going to rain." or my all time fav "Have you tried Aleeve?" I sometimes just wanna look at them and say...Well no I haven't, even though I am on 2 kinds of Chemo treatments, I will have to see if that will make it all go away. (I'm from Pittsburgh, we are known for our smart butts, but I have so far bitten my tongue).
Hi, I too have had numerous bouts with shingles I think thre but possibly a fourth. In my opinion the wear down that the drugs put on you, leaves you relativly at high rish for them. The problem is, once you get them, I feel that the virus does not seem to release in people with our form of auto immune( my opinion only). The best thing I have ever found for them is lydacane patches prescribed by your doctor. I tend to get them in the same area on the back and the patch works well. Still, an awful lot of pain but it helps a lot. I hope this helps.
I am not in Pittsburgh anymore, but I will see if I can help you out. I know a few people that might know one. I will let you know as soon as I hear back from them!
Pamela Corini said:
Tammy Sue....I am looking for a Rheumy in Pittsburgh not having much luck with my doctor in Sharon.....would like to talk to someone who is going to a good doctor. My doctor is clueless doesn't even ask me about my pain ....ignored that my blood work wasn't that great ...I found that out from my PCP......I am so frustrated at this point....thinking I may need to change...my email is pamcorini@gmail.com
Thanks for the responses! I am not able to get the Shingles vaccination because of the immuno-suppression. It is a live vaccine and my Rheumy said no live vaccines while on Orencia and MTX. But what's the worst that could happen, I'll get shingles again from the vaccine? I'm getting them anyway! My shingles have always been in the same spot, too. It comes up and around from the back of my neck, up the side of my head/my ear to my cheek. Luckily I have not had a lot of sores, mostly in my ear or at the base of my neck, not on my face, but the pain has been severe and long-lasting (more than a month). I am due for my next Orencia infusion on the 18th and I'm not scheduled for a visit with the Rheumy until the week after that. I think I am going to cancel my infusion or at least postpone it until after I've met with the doctor to discuss this.
I have never tried Enbrel or Humira. My mother has MS and her mother had MS. My Rheumy said studies have found that people who take certain biologics (Enbrel, Remicade, Humira) are more likely to develop MS or other demylenating diseases. Since I have such a strong family history she thought it was better to be safe than sorry. The risk is said to be less with Orencia so we started with Orencia. I am being tested for Crohn's Disease and if I do end up having Crohn's then I will switch to Humira despite the risks.
Thank you so much for giving me a place to turn for support. Most people can do nothing more than say "oh you poor thing" but they don't understand. Most people don't have chronic pain and most people have not had 3 cases of shingles by the age of 37 so it makes it hard to understand. I just don't know if I am willing to keep wiping out my immune system if it means I will have chronic shingles. I'm trading one pain for another (actually the Orencia isn't helping much anyway so it's not helping the PsA pain anyway).
Another option is Remicade, which is the same form as Orencia. I hope you find some relief you sure are going through alot. And yes it does help talking with people that understand!
Heidi_11 said:
Thanks for the responses! I am not able to get the Shingles vaccination because of the immuno-suppression. It is a live vaccine and my Rheumy said no live vaccines while on Orencia and MTX. But what's the worst that could happen, I'll get shingles again from the vaccine? I'm getting them anyway! My shingles have always been in the same spot, too. It comes up and around from the back of my neck, up the side of my head/my ear to my cheek. Luckily I have not had a lot of sores, mostly in my ear or at the base of my neck, not on my face, but the pain has been severe and long-lasting (more than a month). I am due for my next Orencia infusion on the 18th and I'm not scheduled for a visit with the Rheumy until the week after that. I think I am going to cancel my infusion or at least postpone it until after I've met with the doctor to discuss this.
I have never tried Enbrel or Humira. My mother has MS and her mother had MS. My Rheumy said studies have found that people who take certain biologics (Enbrel, Remicade, Humira) are more likely to develop MS or other demylenating diseases. Since I have such a strong family history she thought it was better to be safe than sorry. The risk is said to be less with Orencia so we started with Orencia. I am being tested for Crohn's Disease and if I do end up having Crohn's then I will switch to Humira despite the risks.
Thank you so much for giving me a place to turn for support. Most people can do nothing more than say "oh you poor thing" but they don't understand. Most people don't have chronic pain and most people have not had 3 cases of shingles by the age of 37 so it makes it hard to understand. I just don't know if I am willing to keep wiping out my immune system if it means I will have chronic shingles. I'm trading one pain for another (actually the Orencia isn't helping much anyway so it's not helping the PsA pain anyway).
Hang in there it will get better.... Its a lot to figure out, and one thing will lead to another, Spring is around the corner, and with better weather, less colds, flus, etc., SUN, all will get brighter, hang in there, and check out the patches! They really helped me.... BOOP
I am not in Pittsburgh anymore, but I will see if I can help you out. I know a few people that might know one. I will let you know as soon as I hear back from them!
Pamela Corini said:
Tammy Sue....I am looking for a Rheumy in Pittsburgh not having much luck with my doctor in Sharon.....would like to talk to someone who is going to a good doctor. My doctor is clueless doesn't even ask me about my pain ....ignored that my blood work wasn't that great ...I found that out from my PCP......I am so frustrated at this point....thinking I may need to change...my email is pamcorini@gmail.com
Hi, I am on MTX (not working) and Prednisone. I will be starting Arava in 2 weeks and most likely Enbrel if that fails to work. In Canada (Saskatchewan) we have to go through a process of taking the cheaper drugs before we can be approved to take the designer ones. My Rhumey wants me to get the Shingles Vaccine now because once you are on the biologics you can't get it. My GP wouldn't give it to me as she says it only works 50% of the time (true) and if I notice a blister to come to her office right away and she can administer an antidote. However, I am going today to a walk-in clinic and get the vaccine. I just can't add another worry to the list. Anyone who is taking a DMARD is 4 - 6 times more likely to get shingles.The feel the odds are against me. I get alot of comfort from this site, knowing there are others who understand the pain and fear of this disease. I hope you feel better soon. Best of luck.
I'm so sorry you're going through this with the Shingles. I haven't experienced this, but you certainly have my sympathy! I hope you begin to feel better soon and I hope this latest bout is much shorter for you!
I can't imagine the discomfort..... That being said once the thing rears it head and it does again its a bit different in what it is, so it prolly isn't all the fault of your Biologicals and/or DMARDS as the are pretty specific in what they do. You stop them to keep the virus from gaining to big a foot hold.
FWIW stress really gets the shingles curl (so to speak) as it also does to PsA. I won't say eliminate the stress in your life, as that would be the funniest thing ever written on these boards.
My daughter has shingles. Had her first bout at 18 (right side) just days before the state tennis tournament. She had her second (left side) bout 4 years latter just days before the NCCAA national tennis tournament. She had her third bout("top Half") when she drew Serena Williams in the Rolex a year latter. She retired from tennis and hasn't had a bout since.....(7 years)
I'm not saying its a mind thing, but...... As you learn to better cope with and fight the disease, it will be better on all fronts. The drugs we take may be immunosuppresors, but we have overactive immune systems to begin with...... Taking the drugs gets us somewhere close to normal especially after some time. The bugger in all this is the occasional course of predi, it really tips the scale.
One last word my cousin was having a terrible time with the shingles - almost continuously. Once they got her PsA under control, miraculously the shingles went away. Recurrent shingles (most people get shingles only once) is often an autoimmune disorder of its own. I don't want to scare you, but a very detailed family history will be helpful to your docs. Recurrent shingles is indicitive of a number of autoimmune disorders (including MS)
hers some extra credit reading regarding vaccination etc:
I am new here, and I wasnt clinically diagnosed with PsA, my doctor is now looking into it. I was diagnosed with fibro, 3 yrs ago, and then again in December along with CFS and IBS-C , when all of my blood work came back good for Lupus, RA, Lymes, ect. I had shingles, 4 yrs ago, and then again 2 weeks ago. I have not taken any of the immuno-supressers. I have only been taking Cymbalta, Trazodone, Linzess and I take naproxen when needed, and I can tell you I am suffering. I tried to go back to work for the last 3 months, and by the time I got home, I was dead, nothing left for my husband or my 4 children, for the next 48hrs. on the chair with moist heat in pain. I know I am just babbling now, but my point was I have had reoccuring shingles, and I am wondering if it has anything to do with PsA. and not the meds.
Well grace, I duuno. (I don't think anyone does) here my read:
If you find tragedy funny (and some do) Imagine someone with a horrible, progressive disease caused by a faulty immune system.
Along comes billions of dollars of research and development and the result are two classes of drugs this disease. One that modifies the immune response and the other that effects a protein caused by the immune response. Neither drug directly effects the immune system only what it does.
By effecting what the immune system does the person gets relief from this horrible, progressive disease but still has a faulty immune system.
So where is the tragedy (and for me the humor)? Along comes colds,, flu shingles, etc all TEMPORARY diseases (Inconvienent and painful at times but still temporary) ll caused by what else - faulty immune system. Now suddenly that person forgets all about the horrible, progressive disease that never goes away (but can be controlled) and instead of blaming the immune system for the problems blames the one thing that gives them relief.
Unless the side effects are WORSE than the disease, whats the worry??????
So I guess I should give you the short answer Grace. 1 in 3 people who had chicken pox will get shingles, Unless the meds gave you chicken pox, What in the WORLD would make anyone think that with a deffective immune system (and had chicken pox) would not be one of the 33% of the population who gets shingles. It surprises me, that we ALL don't have get shingles. Of course its the PsA (or the brat next to you in school mom sent to school anyway despite them being sick)
And, Lamb, I have forgotten the numbers but only a small percent of those that have had it will get a second time. And a smaller percent still will get it a third time and an even smaller percent of those vaccinated for it will get it anyway. Not to mention insurance in this country really fights not to pay for it in anyone under 60..........Last time I looked it would cost me $450.00 to get the shingles vaccine. I decided I would risk not getting the immunization but will call my GP at the first sign of shingles if I do develop it.
Great post!! I learned a lot from this one! I will always remember this and ask this of myself..............Are the side effects worse than the initial disease and all its pain and disabling inflammation? If the answer is no, then I'll know I've found a good medicine for me! One positive thing in all of this is that at least we're dealing with this in 2013 instead of say 1983 or 1973 or certainly anytime prior!! We have in our midst the best medical technology has to offer! When I think of all the people in the past who had to deal with this with only aspirin and an apple, I feel very humbled and appreciative. I'm really trying very hard (and it gets really hard sometimes) to see the positive in all this. Thanks for the golden nugget of advice!
tntlamb said:
Well grace, I duuno. (I don't think anyone does) here my read:
If you find tragedy funny (and some do) Imagine someone with a horrible, progressive disease caused by a faulty immune system.
Along comes billions of dollars of research and development and the result are two classes of drugs this disease. One that modifies the immune response and the other that effects a protein caused by the immune response. Neither drug directly effects the immune system only what it does.
By effecting what the immune system does the person gets relief from this horrible, progressive disease but still has a faulty immune system.
So where is the tragedy (and for me the humor)? Along comes colds,, flu shingles, etc all TEMPORARY diseases (Inconvienent and painful at times but still temporary) ll caused by what else - faulty immune system. Now suddenly that person forgets all about the horrible, progressive disease that never goes away (but can be controlled) and instead of blaming the immune system for the problems blames the one thing that gives them relief.
Unless the side effects are WORSE than the disease, whats the worry??????
So I guess I should give you the short answer Grace. 1 in 3 people who had chicken pox will get shingles, Unless the meds gave you chicken pox, What in the WORLD would make anyone think that with a deffective immune system (and had chicken pox) would not be one of the 33% of the population who gets shingles. It surprises me, that we ALL don't have get shingles. Of course its the PsA (or the brat next to you in school mom sent to school anyway despite them being sick)
Thanks for the good info everyone. I am a little disappointed that I did not get the shingles vaccine before I started immunosuppressants. I didn’t even consider that it might be a live vaccine.
