Discussions that mention enbrel

Arthritis board


Hi again,

I tried a whole host of natural remedies for psoriatic arthritis, but nothing really worked. I wanted them to, and I treid acupuncture, homeopathy, etc etc. Maybe they work for some people but they didn't work for me. The only thing that worked for me, was getting my body to the best shape it could be. The more muscle mass the better. But it's almost impossible to do this without pain relief and drugs. The best thing I can say to you is that the side effects aren't as bad as you think they're going to be. Like I said, I was petrified but once I started them it was nothing like I expected. I take them on a sunday, with my evening meal. I always make sure I treat myself to whatever I like for my sunday meal, and I always have a yummy dessert. It makes me feel better about taking the MTX. I generally don't feel any different, apart from it's a little more difficult to get up the next morning (bu i am lazy anyway!), and I sometimes feel a little bit sicky, but nothing that a bit of fresh air and lots of water doesn't sort out and it doesnt last longer than until midday monday. Obviously everyone is different though. I can honestly say that I havent noticed any more of a rise in illnesses, which was a worry. I was scared I'd catch anything and everything but I havent. The doc prescribed folic acid to take with the MTX as it sometimes helps with nausea, but I dont take them as I havent needed to.

Ive heard that some people take other types of injections, like 'gold' and 'enbrel', but the doc was adament that it was going to be MTX first before any of that. I think that the injections mess with your organs more, even though they work faster.

Taking your first dose is really scary, but honestly, it works. Slowly but surely it works. Eat healthily, exercise as much as your body allows (swimming and walking are good) and slowly you'll be able to exercise more which will make it even better.

It's difficult to come to terms with a life of routine and hospital appointments and even now sometimes I get scared and feel separated from other people my age, but for the most part i have quality of life back and I'm glad. Hopefully one day there will be further advances in medicine to help with this horrible illness, but for now all I can do is try and make you not worry so much. It's scary and never be afraid to admit that it scares you, but it will get easier and the MTX is nothing like I imagined.

Oh and for the psoriasis, betamethasone is the best thing going. And less worrying helps as well. ;)

Please don;t be afraid to ask anything else or just to have a moan. I find that saying 'its not fair!!!!' helps a lot, cause let's face it, it isn't is it?!! Acknowledging that it aint fair somehow helps you to eventually comes to terms with it ;)
Sending you my very best wishes and I hope to hear from you soon.
Tina
xx
Hi Katmel!
I was diagnosed after 7 years by a specialist. I had years of bloodtests in which nothing showed up. It doesn't even show up as raised inflammation levels. Eventually he looked at my left hand which is huge and swollen, and diagnosed me immediately. No x rays though, so i dont know how they can tell how bad it is. The mtx is working but not very quickly and I'm still disabled in my hands with it.

No, youre right, I dont take folic acid. I was told that it was unnecessary unless I wasn't tolerating the MTX, and that in fact nothing is proven about whether it even helps with the nausea at all. Apparently MTX depletes Folic acid in the body, so replacing it artificially make stop you feeling sickly. But they never said anything about it working in conjunction with. Wierd what different docs say isnt it!? Will speak to him.

So if you didnt tolerate the MTX what are you on now? Gold? Enbrel?

How is your son? How old is he and is he coping with it? I never knew it was hereditary, is it possible that i could pass it on then. Yikes.

Take care.
Tina
x
Hi Mcjonval,
Came across your thread while searching info for myself. I was diagnosed with Psoriatic Arthritis last September. I've tried Sulfasalazine and Methotrexate. Sulfasalazine was wholly inneffective, and Methotrexate showed a little bit of promise at first but planed out. I was in the middle of a bad flare up while on the maximum dose of MTX and had been for six months, when my Rheumatologist changed my therapy to Enbrel. I am in my second week of injections so it is too early to be sure, but this last week is the only time in over a year that I have awoken to my fingers not being swollen or stiff. Still far from perfect but better. Other joints show promise too. Hope your husband starts to feel better, if you want I can keep updating on how the Enbrel is working.
Hi, I'm Lesley in New Zealand, haven't posted for a while but am back to say hello and help where I can.

I was diagnosed with PA about 3 years ago and have made great progress since then. I attribute that to getting an early diagnosis and having a great rheumatologist. (BTW, I have PA but no P). Diagnosis is process of elimination, there is no simple test for PA.

Doctors tend to start patients on Sulphasalazine or Methotrexate as they are the safest, least costly drugs that have been proven to have positive effects on PA. I started on Sulpha and it was OK but I developed headaches so my rheumy stopped that.

With all DMARDs, progress is slow and you may not even notice any positive effects...until you go off them and you are back in agony. So be patient. Normally you start with a low dose so your body has a chance to get used to the drug, and gradually build up. Don't get too worried with all the possible side-effects, it is relatively rare to experience anything nasty. Your body really is a wonderful machine that can handle a lot. I've been on Mtx for a couple of years now, and I am in great health. It hasn't affected my immune system, or as my rheumy told me, the body seems to compensate for the dampening immune effects of Mtx.

I also take anti-inflammatories ( started on Arcoxia but now on Naprosyn as Arcoxia gave me heart palpitations) and have also taken Nortriptyline ( small dose) for the pain. The latter is fantastic - helps you sleep, and dampens down the daytime pain.

Mtx has gradually knocked back the PA. I have it in every joint, muscle and tendon, everywhere in my body. But I currently have little pain anywhere, and that is a major improvement from severely painful hips, ribs, spine, etc. I can walk, even run a few steps, swim, etc.

It appears that Mtx works the best when in conjunction with another DMARD ( disease modifying drug) or TNF ( TNF inhibitor, like Enbrel). My rheumy has experimented with combining it with Plaquenil, and that has made a huge improvement. I am usually in agony throughout winter, but this winter have been as good as I'd be in summer, apparently because of the added Plaquenil. If that combo doesn't work, Mtx and Enbrel is proving very successful for many people.

It's important to have your monthly blood tests, and they DO provide peace of mind. They catch anything going on with your liver or kidneys, and the drugs can be stopped ( so no permanent damage occurs). It's also important to take the folic acid. For me the best regime is Mtx split over 2 days ( Saturday/ Sunday) and 0.8mg Folic acid taken every day.

I hope this has helped. Living with PA is not easy, but with support from other sufferers, it is bearable.

Cheers
Lesley
Mcjonval,

It still sounds like you and your husband are pretty apprehensive about the MTX, so was I. It helped for me to know that my Rheumatologist's Nurse practitioner has been on it (on and off) for 26 years. She was diagnosed with juvenile RA when she was a child. I noticed also that you said your husband has been experiencing itching on his forearms, I have experienced this before when I am taking pain meds. (Maybe, just a thought.) I heat up really badly too (My wife calls me the human heater) it doesn't cause me too much discomfort luckily. Your husband is currently in TB therapy, are they prepping him in case they want to try Enbrel. Just curious, because my Rheumy told me they would have to put me on TB meds if they wanted to try that medication. I just took my last injection and am crossing my fingers. I'm currently feeling a little better than even a short while ago so I hope. I've found that if i can get up and take a short walk when I'm having trouble that it can help to loosen my joints up and decrease the pain somewhat. Sometimes this is very hard though. I've done a lot of research into the medications, symptoms and relief of PA. So if I can help info wize I'd be happy to. Hope things start looking up for you guys!

:) kscott13
Mcjonval,
I asked about the possibility of your husband taking Enbrel because my Rheumy says it is generally more affective with PA and so far also safer. My Pharmacist actually suggested that I look into it. It seems to be working Quickly for me all my joints feel like their improving except rt. knee, but that one is badly damaged. Yes, my wife does feel a lot of pain and sadness because of my problems. I recently called in to work to comfort her when I had returned from my Rheumy's office and he wanted to step up my MTX and was concerned at how quickly my index and middle fingers are twisting. She burst into tears that night. Often I don't think about how something like this affects her, because I'm so preoccupied with pain. (Never thought I'd be worried about these kinds of serious health issues at 29 yrs.) Hopefully the Enbrel will work and continue to work, I got so excited when the MTX started to help, but it caused me nausea and vomiting and started to plane out. Pharmacist said some peoples bodies adjust and lower the number of receptors MTX can attach to. Also if your husband ever gets the nausea vomiting or other side effects tell him to call and tell the Rheumy they can up the Folic Acid this helped me. I hope your husband finds a workable therapy for himself, I understand how you two feel. Well, God Bless Gotta go!

Kscott13
Hello mcjonval,

Sorry it's taken so long to get back to you. The swellings gone down in my rt. knee, but it still hurts me a lot, I think it's just gonna be that way. I had injection site reactions the last 2 times I took the Enbrel, not bad though still seems to be working. I'm very excited. I'm also in line for a promotion at work that will make my job a little less demanding physically, so I'm crossing my fingers. Let me know how your husband is feeling. Glad to hear you were out and active especially since the goal for all of us is the pursuit of a more normal pain free life.

God bless
kscott13
Mcjonval,
Just wanted to write back. Sorry to hear about your husband, sounds almost exactly how things progressed for me. I would suggest that your husband does pursue the Enbrel if at all possible. From what my Rheumy said any higher of a dose of MTX above and beyond 25mg once weekly is too toxic and in studies doesn't yield good enough results to justify continuing. I am still not perfect and never expect to be but I chased my 2 year old son around the house all weekend long, something I never felt like doing or felt well after doing before I started the Enbrel. I have had three injection site reactions but see it as a small price to pay for feeling normal again. Flare ups make me feel sick too like I have a fever, and pain is extreme last one was happening when I started the Enbrel, haven't had anything like it since. I hope this helps, and I hope your husbands Rheumy helps you get a hold on his disorder. Please tell your husband that I feel his pain and it can get better. Let me know how he's doing and you as well.

Kscott13
Hi Mcjonval,

Just thought I'd share my latest news with you. Had an appointment with my Rheumy on the 11th and the news was great. He believes the Enbrel has done wonders, joint swelling is way down from last examination. He said he's glad we found a good medication for me as he expected that I would be disabled within the next five years and unable to work considering how badly my joint damage was progressing. He also said that I can expect the Enbrel to give me more benefit as it typically peaks in effectiveness at about 6 months. This medication has been a miracle so far for me. I finally have hope to live a normal life. How are you and your husband doing, I hope as well as can be under the circumstances. Any new news. Tell him to hang in there as well, they will find something that will work for him. I remember feeling so depressed and ill when I was taking MTX especially when I had a brief period of relief and then it seemed to stop working. I thought that I would always be in such bad pain, that I was the one patient that wouldn't respond to any of the medications. I felt hopeless. But now I know that things can change for the better, and I'm sure they will for him too. My wife also says Hi! Take care, and God bless.

Kscott13
Hello Mcjonval,

Good to hear that your husbands rheumy is pro-active. I'm still doing well on Enbrel, but got sick this week (cold) so I have to skip my next dose and take anti-biotics as a precaution. My rheumy says he doesn't expect any problems from the infection but just wants to be safe. I hope whatever your husbands doc does it helps. I also got flu like symptoms while taking MTX. It's no fun. Hope your both doing well. Sorry, haven't had time to reply lately. Just thought I'd say hello to you both. God Bless You.

Scott