Humira - RA - onset of muscle pain any remedies please?

ratface

Hi - I've just started on Humira. Had my 4th injection Wednesday.
Since starting on Humira I have been experiencing excruciating pain in my right leg and ankle when I first get out of bed in the morning - this was not happening before Humira. I had been experiencing pain in my right groin previously when getting up and needed to stand a while and then hobble to the bathroom but not to the same extent as since being on Humira.

Some of the pain is definitely muscle related. My right shin also aches on and off during the day. Has anyone else had this happen since taking Humira and how did you get over it? I am presently awaiting hearing from the rheumy nurse as I had x-rays on my right hip and right ankle earlier in the week.

Meds. I'm on at present for RA: MTX, Leflunamide, Diclofenac, plus various others to counteract side effects from RA meds!

Thanks and regards Rat Face xxxx

kathbee

Hi ratface

I was on Humira for 6 months - last May to October 2010.
I also take MTX and was on Leflunomide too.

Unfortunately the side effects became a bit much,
one of them being muscle pain. On the patient info
inside the packs it does say muskloskeletal pain as one
of the side effects ( 1 in 10) so I was taken off it.

I havent yet gone back on it.

Hope you get it sorted one way or another.

Kath x

ratface

Hi Kath,

Thanks for your in put.

I asked the rheumy nurse on Wednesday whether she had found anyone else that had experienced the same problems and she told me that she hadn't and that she had been over seeing Humira users for at least 10 years.

I'm sure that when I was looking at various sites before using Humira that I came across one where someone had said that they had been getting muscle pains on Humira but was prescribed something else for the muscle pain which erradicated it? Can't find the site again (typical).

Are you taking another anti-TNF instead of Humira ?

Thanks, Rat Face xxx

frogmorton

Hi Rat face

l am so sorry you must be so disappointed. I have no personal experience of thsi myself, but have you had any benefits from the humira yet either?

Love

toni xx

kathbee

ratface wrote:

Hi Kath,

Thanks for your in put.

I asked the rheumy nurse on Wednesday whether she had found anyone else that had experienced the same problems and she told me that she hadn't and that she had been over seeing Humira users for at least 10 years.

I'm sure that when I was looking at various sites before using Humira that I came across one where someone had said that they had been getting muscle pains on Humira but was prescribed something else for the muscle pain which erradicated it? Can't find the site again (typical).

Are you taking another anti-TNF instead of Humira ?

Thanks, Rat Face xxx

Hi RF

No, not going back on Humira as yet or any other anti-TNF's for the time being. Humira was my first shot at Anti-TNf treatment. Seeing the rheumy in another 3 months to then decide what to do next. Trouble is with trying to ease one ailment, we sometimes have to take other gubbins to counteract the side effects and so on and so on. What to do for the best, I really dont know at the mo.

Kath xx

arty

Hi RT

Sorry your having problems, the main thing is they need to look into the problem and find out if it is Humira related or RA.

I have RA and I am on the same meds as you inc Humira, I have been on it for 4 mths now, work well at first but now doesn't seem to do much
No side affects as such so im sorry I can't advice on anything.

Hope they look into it further for you.

ratface

Hi Toni and Arty

I do seem to have had some improvements since starting Humira:-

My left ankle has not been so painful or ached as much;

Previously my shoulders were killing me when I was trying to sleep (pain waking me about every 20 minutes throughout the night - 6 months of this was driving me mad) had Polymyalgia Rheumatica in shoulder muscles back in 2007 which probably contributed and since Humira sleep has been better;

Joints in hands have not ached so much (strange that knuckles of right hand should ache since they are replacements!);

I do wonder whether PMR is a contributing factor to the muscle problem I am having with Humira I will have to ask the question when I next see the rheumy nurse.

I had shingles last spring - my daughter has suggested that maybe this may have something to do with hip/groin/muscle problems while taking Humira - another question to throw at the rheumy nurse. (I think my daughters theory is that perhaps it's nerve related?) I suppose there is a 50/50 chance that she's right.

Humira has definitely been a 'swings and roundabouts' experience so far.

Meanwhile - paracetamol seem to help the aches (for the time being anyway).

Love to all and have as good a weekend as possible.

Rat Face xxxx

dreamdaisy

You may need a stronger form of pain relief, ratface, I fear that paracetamol may lack the required clout - I am on co-codamol 30/500 for every-day use and I have an arsenal of stronger pain relief for the more difficult times. I find I can downgrade to the cocos immediately after the humira hit, but as the fortnight wears on I sometimes have to upgrade to tramadol 50mg or, occasionally, slow-release 100mg trammies (that is dependant not upon the pain but on how I am coping with it). DD

skezier

Hi R.F,

I wonder have they ever tired muscle relaxants or nerve blockers at all? thing is it could be drug related or condition related and sometimes inflammation really affects the nerves and muscles as well.

have you talked to your rumo or rumo nurse about it all? I just think with the shine pain as well its worth finding out, if possible, what is behind it all.

Its not fair that a drug that should help can also do damage to muscles especially... they do seem to be susceptible to so many different drugs and we need them so much as well.#

really hope they can get you sorted a bit better and that if the side effects are ok it will work for you. nice to meet you. Cris x

Hi Kath (((((( )))) xxx

ratface

Hi Dream Daisy and Skezier

You are probably both right (Dream Daisy) in that paracetamol are not strong enough painkillers - and (Kath) I definitely do need a muscle relaxant first thing in the morning. Would need to take either of them the night before as my problem is first thing in the morning. Thanks to you both for your input, it's definitely much appreciated.

Saw a rheumy nurse last Wednesday, she was not my usual rheumy nurse unfortunately, and had x-rays of right hip and ankle. Haven't as yet heard back with the results, she did say that it might be Friday (last week) before she could look at the x-rays so perhaps either she, or my usual rheumy nurse, may come back to me some time soon..... Hopefully.

Not due to see rheumy consultant until May.

Thanks again for your input.

Love Rat Face xxxx

skezier

Hi R.F

Some muscle relaxers are daily and most are at night. I was on some that began with an r that were 3x a day when the lumber used to spasm really badly... its out grown that one or i have fought it big time The muscles in my spine and lesser degree neck are about all that's holding it together now so you have to balance between unlocking them and keeping them strong.

I don't use them now but they did help for a while.

Some people find paracetamol a decent one for pain, i have to say i don't but there are so many combinations out there and its ok to say this isn't working for me and get another mix.... I wait for the rumo but some find there gp is ok to do the changes for them. (I had useless gp's for so many years I got used ti using the ruimo that's all).

I do know that muscle strength is important but so is a clear diagnosis and well at least the xrays will help them to see what is going on. With a bit of luck they will help you and well once they know whats going on they do ten to help more..... it gets easier as well in some odd way. Fingers crossed for the end of may. Its not too long really if you say it fast. Cris x

ratface

Hi all,

Update on pain in right leg whilst on Humira:

Leg/buttock/knee/ankle (and etc.) pain is due to sciatica. Have seen physiotherapist and I am having acupuncture for it on Monday (01/08/11).

I have been taking Tramadol and paracetamol 4 times a day after seeing GP and talking to rheumy nurse. Tablets only 'hide' the pain some of the time.

I decided not to have any more Humira. Don't think me decision was taken very well by my rheumy team but I am convinced that as I had'nt had 'sciatica' problems before Humira this had to be the cause. Too much of a coinsidence for me.

I am now awaiting a call from rheumy nurse giving me a date for first infusion of Rituximab (MabThera).

Hopefully acupuncture will help the sciatica (which would be a step forward). Really thinking positively that this will help (although ready for disappointment as well).

Then await Rituximab .......

Will keep you posted

Rat Face xxxx

kathbee

Hi RF

Like you, I came off Humira (see my earlier posts on this thread).

I am now on Rituximab, actually I quite fancied the way its given.
First infusion, then two weeks later second infusion, although it does
mean spending 10am to 4pm in hospital hooked up to a drip, but then no more should be needed for up to a year.

So I have had my first and secondin fusions and have a rheumy appt in October to see how my blood tests are going.

Prior to being put on Rituximab my blood tests showed extremely active RA and therefore my DAS (disease activity) was high enough to warrant the Rituximab.

Its only 2 weeks ago that I had the second infusion and already I feel slightly less exhausted. Difficult to say what the pain level is as I have a lot of knee and wrist pain but told thats a lot to do with degeneration, due to having RA and OA for many years.

I still have to take MTX once a week though.

Hope it all works well for you.
Let us know how it goes.

Ksth

ratface

Thanks Kath - Rheumy nurse said that the first Rituximab infusion was likely to be within the next 2 weeks - knowing my luck that will change.

kathbee

ratface wrote:

Thanks Kath - Rheumy nurse said that the first Rituximab infusion was likely to be within the next 2 weeks - knowing my luck that will change.

Oh, thats good news RF, fingers crossed.

It seems a long time to be sat with the drip attached
but both times there has been someone having the same as me
and we have chatted and swapped notes and made the time
pass reasonable quickly. And the rheumy nurses are all really
good and they tell us a tale or two ( no names mentioned of course)
and we do have a laugh with them.

Kath

ratface

Update on acupuncture - I have now had 3 sessions of acupuncture and first infusion of rituximab.

I definitely saw an improvement after the acupuncture and before the rituximab infusion.

Since the 1st infusion of rituximab I have seen even more improvement (the steroid infusion prior to rituximab infusion will most definitely have also helped)

I am due for the 2nd retuximab infusion Wednesday next week so hopefully (fingers crossed) there may yet be a further improvement.

With regard the RA and rituximab - I have just realised that RA doesn't seem quite so bad either.

ratface xxxx

frogmorton

Oooh!

That is BRILLIANT news Ratface!!!!!!!!!!!!!!

I am so pleased

Long may it continue

Love

Toni xx

dreamdaisy

Good news indeed, I am so pleased for you! DD