try again, I made a mess out of my first try,

[beringer]

I sure messed up my prior post ... I've been on a actemra for 14 months, the pain is gone & my weight is good but I still don't feel like myself, I tire out fast & have no get up & go. Does anyone feel as tho your life has changed after GCA- PMR

[30048]

I only lasted on Actrema for five months but it did make me feel poorly. First two weeks were not myself and then it gradually got better and at the three week mark I began to feel normal only to have to have an infusion again in a week. It lowered my blood numbers but did not really do much for my original discomfort. It lowered the amount of Prednisone I needed but the trade off was not worth it for me.

[beringer in reply to 30048]

Hi,,& thanks for responding. I've been on the Actemra for 14 months with no preds for 13 mos, due to horrible side effects. Now my labs are not good. My total bilirubin is way hi, I go back to Dr before next infusion. Can You tell me what happened while on Actemra, I'm on double dose. I have not felt Good an entire day since I got sick with GCA & PMR, could it be in my head? I'm 75 yrs & have our 6 yr old great Granddaughter every day & thats a good thing, She makes me happy & always brings a smile. Sorry for this long reply, just needed to vent & really tired of having no energy, being a ( excuse me ) bitch & depressed. Any ideas will help.. THANKS. Betty

[30048 in reply to beringer]

At first I did not have too bad a reaction. Just some nausea the first couple of days. Although the doctor said it was out of my system in 28 days, I did feel like it built up as I went along. I felt more tired after following infusions. After the fifth infusion I had an odd reaction. Woke up and felt like my whole insides were on fire.. The only way I can describe it is to say that I felt like someone made me swallow a whole bottle of clorox. That was the end for me. I have heard since that people often have that reaction while undergoing chemo. Just as an aside....I have Shingles at the moment which have been extremely painful. While on the internet , I discovered that coming down with that virus can be set off by the various biologics like Humera, Remacaid etc. I think Actrema is in that same class. One doctor said that when you start fooling around with the immune system you expose yourself to more things. I know it is a catch 22

[jinasc]

Are you saying you are just on Acterma (Tocilzumab) or are you on both Prednisolone and TCZ?

[beringer in reply to jinasc]

Yes, I was only on Preds for 2 mos, I had every side effect that preds can cause. I had GCA & PMR over 4 months with a sed of 117. The Dr. Treated me for fibromyalgia & lock jaw. Then I got into the Rheumatoid Dr. I just feel so dead inside, used to be a fun person but all that's gone. If I didn't have 2 lil dogs I don't think I would get up. I want to know, if anyone else feels like I do. Lifeless, tired, cranky & depressed. Thanks for the reply.

[jinasc in reply to beringer]

Well that is a first for me, there are 83 listed side effects for pred and one that is not listed which we call 'treacle brain' of steroid brain fog.

I went into remission after 5 years with GCA and am still in remission nearly 4 years down the line.

There is light at the end of the tunnel, it is just we don't know how long is the damn tunnel.

Treat yourself like a 'precious princess' and you will get through it and you will improve.

[beringer in reply to jinasc]

Wow, how wonderful for You, I'm so happy Your doing so well. When I first got this or as of yet, no one told me that when my labs are good it does not mean I'm fine, I didn't know, no matter what drug your on, chances are You still feel bad. I'm still learning, thanks to folks like You. Thank you so very much for listening to me ramble. Stay well. Betty

[30048 in reply to jinasc]

Yes I was on both. The reason I was on actemra was to reduce the prednisone. I was told it was a prednisone "sparer" . I decided that it was not worth it. Plus I had a bad reaction after my last infusion.

[jinasc in reply to 30048]

Were you on the current trial?

It may help you to google and read The Spoon Theory to help you cope with the fatigue. I found it was best to 'go with the flow'. It took a while before I learnt to listen to my body, but once I did that life got a whole lot better.

I also found Bowen Therapy helped enourmously, well worth giving it a shot.

[beringer in reply to 30048]

I was only on Preds 2 months because of side effects, started the actemra infusion 1 month prior to stopping the preds. Now my labs are not good, bilirubin

[beringer in reply to 30048]

What was your reaction to preds, if you don't mind telling me. Thanks. Betty

[beringer in reply to beringer]

I was very sick to my stomach, sweat 24 hrs a day, I would become violent & my heart raced, lost more weight & my nerves were like alive, the slightest sound or movement & I would jump up & take off as if to get away from it. Not a happy life at all. Now I worry if I have to come off Actemra that I would need preds again. I know I'm not alone in this GCA world & I'm so glad I found this forum. Thanks.

[beringer in reply to jinasc]

Just Actemra 14 months. Started out on 60 mgs preds for 1 month during to side effects. Any ideas? Thank You. Betty

[beringer in reply to jinasc]

Only Actemra infusion. I was on Preds for 2 mos at the start,

[Hidden]

This lack of energy is my biggest problem too. I'm on 8mg pred and methotrexate which (only) just control my symptoms so pain is not an issue but I am cream-crackered all the time. I break into a sweat just moving from sofa to sofa and trying to keep working means I sometimes spend all week recovering from a pathetic evening's teaching just to do it again. I used to be such an energetic woman and I am utterly changed.

Acceptance is the key for me. It has taken me 4 years to understand that I have a chronic illness and that my life has changed forever. I know this isn't true for everyone, but it is my reality now. I have to pace myself on everything - shall I have a shower or clean the kitchen.? If I cut the grass, I can't do the food shop - that sort of choice. I have to be quite Pollyanna-ish and remind myself I could be blind and in a wheelchair if it weren't for my drugs. Dorset Lady helped me to get here psychologically. I think it just takes time to accept quite what vasculitis does to us. It is a serious disease unfortunately.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Saxjody thanks for your lovely comment above. We all want to help others on this forum, so it's nice to know when that happens.

[Celtic PMRGCAuk volunteer]

Betty, see my reply to your first post.

[raymck]

Hi, Never was offered Acterma so took preds for year and been on painkillers for the next year in Club Zero. Definite GCA biopsy result on loss of sight in one eye, so thought no more about PMR. However due to continued pain in joints/muscles I am having more blood tests to see if my markers are back. Like others I assumed the pain was just the legacy from pred withdrawal, but not so sure any more. Thanks for your input by the way! Keep us posted.

[Sha9rons]

No energy, no stamina and the feelings similar to all described--including looking on the bright side for what I do have--kept my sight and can still move altho not very fast or far or sure-footed...still waiting for results of bloodwork at rheumatologist and to get EMG--type of electrical test for what nerve damages have occurred. Therapy for neuropathy and use of serrapeptase and turmeric seem to be helping some...will see what another month does. Down to 17.5 mg of Pred now and feeling pretty sore but hanging in there with it for the two weeks if possible--then supposed to reduce by another 2.5 mg--depending on what doc says on bloodwork as my sed rate is actually quite low (good thing). But-as one doc on it states-treat patient, not labs...

Good luck to all of you as we tackle this challenge of every and each day

[jinasc]

I have copied this from another thread on this forum (if you click on My Communites and then visit all posts you will find the thread. PMR&HCAuk North East Support have made it available at £5 which includes postage and packaging.

posted by greenlander.

Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago. I do hope PMR&GCA North East will be able to make it widely available. Worth whatever it costs.