I was dx (6 months ago) with ra - only 1 or 2 places it isn't. Major problem areas at present are hands, lower back, spine and neck. I'm on mtx (initially on prednisone - with some immediate pain relief effect - but the diabetes didn't take too well to it and had to come off it) + copious amounts of panadeine forte. Also take other meds for diabetes but not on meds currently for the myeloma. Mtx dose was doubled after I came off the prednisone but so far nothing does much to touch the pain levels. I have a high pain tolerance but not very effective at present. Will see my rheumatologist again this week and mtx is likely to move to max. Living with the pain levels is just so tiring!! Everything suffers - home, work, study, deadlines etc. (female, early 50s)
Any suggestions as to what has been helpful for you for coping with the pain (and fatigue) would be gratefully received! Thank you.
Hi greenfrog. You are getting a med with codeine in it. Codeine is great for sore throats and cough. This may not be effective for the pain you have. You need to ask your doctor for something that is good for musculoskelatal pain such as oxycodone or hydrocodone. Good luck. Hi Greenfrog
I understand how it is to be in pain all the time. I am new here also. I really only have found so far that to be pain free required high doses of prednisone. I had to stop also because it causes my blood sugars to go from normal to diabetic requiring insulin.
I guess my only suggestion is to not let the pain escalate and to continue your pain meds.
In the beginning I was taking hydrocodone only when I couldnt stand the pain. My doc said take it everyday to keep my blood levels steady.
Maybe you could try different pain meds if you feel that you arent getting any relief?
Sorry you are feeling badly.
Hugs to you!
Barb
On Remicade (3 treatments so far) hydrocodone, ibuprofen. Seronegative RA, sarcoidosis, hypothyroid.
Hi greenfrog. Besides the pain meds the others suggested, you need effective treatment. If the mtx isn't working, you might want to ask your doctor about switching to a different DMARD, like Plaquenil, Imuran or Arava. Has your doctor talked about adding a biologic as well?I agree with InnerGlow- once I had the right "med cocktail" for me pain was no longer an issue.Greenfrog,
I agree. Pain is tiring. Personally, I'd say ask for a stronger pain med.
I have two questions. How long have you been on the doubled-dose of MTX? How long until your next RD appointment?
Thank you so much for your suggestions.
Have been on doubled dose of MTX for about 8 weeks. Appointment with RD on Wed and GP on Thurs so I'll ask more questions about additional treatments and pain meds.
Problem with pain meds too is that I work full time and need to drive considerable distances (a real pain!) so also need to be careful if they have a sedative effect.
Welcome to the board,
I think after reading some posts, you'll see we all go thru the nightmare of the pain.. and you're darn lucky, to have a high tolerance!!
work.... shudder... I just do not know how people can do that... this may not be what you want to do, but I suggest filing for disability, its a very looooong process... but.. but.. its just in case.. and really really worth, it to put it into motion... even if you want, to keep working, it won't hurt to file for it.. and may turn out to be a blessing, and at least it'll be there, or in the motions, IF.. you do need it.
I'm bipolar, so thats when i tried for disability, took me 2 yrs and a lawyer and all i can say is
Thank Goodness!!
I'm soooooooo grateful..
anyway, hope you can get some relief soon
hugs
I also work and I am a single mom of a little one so I understand the pain med dilema. I see a pain management specialist who has been wonderful. I have been receiving nerve blocks for chest wall pain and I also have a TENS unit. In the past I have had ultrasound done through a physical therapist. Talk to you dr.-there are many ways to treat pain. I do have Lortab that I can take if things get bad but I have the exact opposite of sedative effect. They make me hyper to the point that I can't function-much less sleep.hi greenfrog sorry about the pain.. you have a lot going on.
i see you have myeloma ..i wonderd did the ra come first or the myeloma
if the R.A was diagnosed first did you have paraprotein in the blood at
this stage.. paraprotein was found at my ra diagnosis. but so far remains low..
Boney
If you've only been on the MTX double dose for 8 weeks, you may need to give it more time to work. What is the double dose? You said you may be put up to the max which tells me you're not at 25 mg. yet. Also, injecting the MTX is more effective and will give you more bang for your buck. So, 25 mg. of injected MTX may very well help you, but you may be one of those people who has to wait a few months for the maximum relief. It sounds like you're tolerating the MTX well so far, so this may be a good option for you.
BUMPY UP..
Boney2008-05-27 13:38:53Hi Boney,
Diabetes came first, then the paraprotein was picked up as a result of the regular diabetes blood tests. Bone scan, bone marrow biopsy and myeloma diagnosed 5 months after diabetes. RA 6 months after that. Myeloma is stable for the moment. I reckon that's my 3 (all in less than 12 months) - don't want to be greedy and add any more!
Have they figured what the paraprotein means for you?
greenfrog Hi Everyone,
Thanks so much for your suggestions, thoughts and support - very helpful.
An update - have just had plaquenil and arava added to the mtx so we'll see where that goes. Trial for 3 months and see if it improves things otherwise we'll move to biologics.
Feel like a walking pharmacy - wonder if I'll begin to glow in the dark???!!!
Will be interesting to see whether this all helps with the fatigue and brain fog as well as the pain.
[QUOTE=greenfrog]Hi Boney,
Hi Boney,
Sorry for the delay in getting back to you. Have had a couple of off days with the new meds and trying to work foggedly to try and get an assignment finished to submit on time!
You're not being nosey at all - I'm interested to know that there is someone else with RA who has paraprotein issues. Sorry you have them too.
At the moment there is no treatment being given for the myeloma - it is a monitor, regular bloodtests, regular visit to the haematologist and wait and see. The current status is indolent or smouldering. I haven't reached the "magic marker" figure of 30 for the paraprotein levels. Once it reaches that, we need to look at chemo and possibly a bone marrow transplant later. I'm hoping the "magic marker" stays unachieved for as long as possible. The diabetes and RA are enough to deal with.
What they did tell me is that once the immune system is severely compromised, then other problems take the opportunity of presenting themselves eg the RA. I have an hereditary link with RA with my grandmother - she had it mostly in knees and hands - her fingers were bent at a 90 degree angle.
My lymphocyte count keeps doing weird things though - no one seems to know what that is about. White cell count high end of normal. Can't take prednisone ever again because it sends the diabetes out of control - don't want to go there again!
So far I haven't been able to find a great deal of info on links between myeloma and RA except the immune system weaknesses.
Hope your levels continue to stay low too (paraprotein).
Cheers and best wishes
greenfrog
Hi Greenfrog, after many many therapies and allergies and intolerances, I have finally found a better combination for me that seems to work better than anything else I tried. I am now on 12.5 MTX, 8mg pred, endep 50mg am, 75mg pm, and Oxycodone slow release 20mg am and pm, for breakthru I am allowed 50mg Tramadol 4 x a day and panadol, regularly 4 x day. Hope this is helpful. Best of luck to you Janie.
Hi greenfrog thanks for the reply.. i do not know the level of paraprotein
in my blood i just got a letter 13yrs ago to tell me i have it and it will be monitored
i never even knew what it was until recently.. the power of the internet lol..
i hope yours continues to lay low..i see you are on mtx ..i wonder as mtx is chemo
drug if it may help keep the levels low.. allthough the levels of mtx for ra are really
low dosage.. i have had recent bloods done no diabetes was found..
i think this was fasting glucose levels..allthough i am low on vitb12 and folic acid
unrelated to paraprotien i know.. i will have a look for ra myeloma info..
wishing you well... Boney
Hi Greenfrog, ask your RD about Tramadol. I use it occasionally and it works well enough to take the edge off the pain. Am glad to see that other meds were added. It can take a long time to find the right combo of meds and it has to be done by trial and error. Don't lose hope or faith that there's a combo that will work for you. Lindyhi greenfrog the information i see about paraprotein is that it is
mainy discoverd by chance ie your diabetes and my ra blood work
here is a small info on paraprotein and ra..
Summary There is evidence that
the prevalence of monoclonal parparoteinaemia is slightly increased in
patients with rheumatoid arthritis. The possibility that this may be a
marker of the development of later malignancy in such patients is
explored. Mortality rates in rheumatoid arthritis are increased
although the development of lymphoreticular malignancy contributes only
a small percentage of this increase. However, it does seem likely that
patients with longstanding severe rheumatoid arthritis are more at risk
of developing myeloma or lymphoma if they have a monoclonal paraprotein
band in their serum. IgA paraprotein seems to carry a higher risk than
IgG whilst other factors such as urinary free light chains and the
presence of secondary Sjögren's syndrome are of less prognostic
significance. Similarly a monoclonal para-protein may identify patients
with primary Sjögren's syndrome who have a particular risk of later
lymphoma whilst this risk does not appear to extend to patients with
systemic lupus erythematosus. Patients with an overlap syndrome do not
appear to be at greater risk than those with “pure disease”. The
association of other rheumatological disease and paraproteinaemia is
briefly discussed
Boney
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