Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!



  • Please log in to reply
10 replies to this topic

#1 gemjar


    Senior Bronze Member

  • Members
  • PipPipPip
  • 33 posts

Posted 15 April 2008 - 12:25 PM

Forgive me if this post appears twice, the first one seems to have disappeared into cyber space ! I'll try again.....

I have been taking Mobic for just on a month and at first I could really notice the difference. Now I don't seem to feel any different than before I was taking them...the aching muscles and joints are back. The pins and needles have stopped in the arms/hands at night and I've been left with a permanent numbness in my little pinky as a result. The legs are now what give me trouble...they feel like dead weights most of the time and when I stop to sit or go to bed at night, they just ache constantly, keeping me awake.

Is it possible for the anti-inflammatory medication to stop working, or has my body just become used to it ? And would the anti-inflammatories be expected to work, when I show no signs of joint damage in xrays that I've had ?

I go back to the rheumatologist in 3 days for the second time and I'm afraid he will send me on my way without answers/explanation to why I have these symptoms. He will have the blood/urine test results, but I have this sinking feeling again that it's not going to show anything and I'm actually hoping it does ?! I suppose its recognition I need and I'm desperate for that at the moment.

Any advice as to how I deal with the next step...this is so hard :(

Karen.....(feeling lost at the moment)

#2 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 15 April 2008 - 12:34 PM

I don't know for sure, but from personal experience is appears that some drugs do stop working after a while and you either need to switch drugs or up the dose. Of course, that is something that you really need to discuss with your rheumatologist. I have found this to be true with my PPI for heartburn, my immunosuppressant and anti-arrhythmia medications. However, it took several months and even a couple of years for that to happen. One month doesn't seem long enough to have built up a tolerance, but then I'm certainly no doctor. Please ask your rheumatologist about it. Be sure to write everything down that you are experiencing. We do seem to clam up and forget things when we go to the doctor.

I hope you find something to ease your pain! Let us know how your appointment goes.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 15 April 2008 - 12:35 PM


I agree with Janey. It depends on which doctor you ask, but I've been a nurse for years and I have seen this happen quite often. You may need a change of meds. I'm glad you have an appt coming up soon, and hoping you can get another med that may work better for you.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 15 April 2008 - 12:56 PM

I don't know much about it at all but I hope you get some relief soon (perhaps a new med from the rheumatologist in a couple of days, it's good you have an appointment coming up soon).

I am curious though, what could show up in the xrays as joint damage, collagen buildup?? :unsure:
Sending good wishes your way!

#5 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 15 April 2008 - 09:04 PM

Hi, Karen

I had to change anti-inflammatories a couple of times over the past five years, so I do believe that you can 'get used to them'. Inflammation does not necessarily cause joint damage, so clear x-rays doesn't mean there is no inflammation. Certain blood tests (ESR for one) are better measures of inflammation. Not all pain, though, is caused by inflammation and different pain relievers act differently. My doctors have advised use of paracetamol (acetamenophen) along with the anti-inflammatories for the kinds of pain which are not related to inflammation. They both cautioned that I should take no more than 4mg of the paracetamol in any one 24 hour period.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#6 Karenlee


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 16 April 2008 - 01:10 AM


I'm sorry I can't answer your questions but I am hoping you find something that works for you.


#7 MaryFanPhilly


    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts
  • Location:Central California

Posted 24 April 2008 - 01:32 AM

Have you spoken to your rheumatologist about your circulation? I have diabetes as well as sclero, and between the two, my circulation is very poor which gives me many of the same symptoms you describe. I have pain, numbness, pins and needles, 'heaviness' in my legs etc as well. It wakes me up several times in the night. Even if I am sitting too long I have a hard time getting up. Part of this is also the arthritis that comes along with sclero.
Talking over these symptoms with both my rheumatologist and my endocrinologist, they agree that anti-inflammatories will only go so far with circulatory/arthritis problems. I do find that if I overdo, walk too much (for me that means walking around the grocery store!) or using my hands too much will make it much worse.
I hope you find something that works for you.... I was on pain medication for a long time which helped me get through the day when it was milder. Do try taking something first thing in the morning, and last thing at night to see if that is any help.
Keep us posted.
Love, Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#8 gemjar


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 33 posts

Posted 24 April 2008 - 01:05 PM

Hi Mary,

Thankyou for your reply :)

I am currently undiagnosed and my rheumatologist does not believe I have an autoimmune disease, because my blood work all came back within normal range. He doesn't believe in fibromyalgia and got quite defensive when I specifically questioned him on scleroderma. Anyway you can read what happened in my post "update on 2nd rheumatologist appointment".

My local dr did admitt that the anti-inflammatories will only work when there are flares and that it's possible for me to not be gaining any benefits after a time of use. I do find that my aches and pains vary in degree from day to day, which confuses me and makes me wonder if in fact anything is wrong.
But then this last week I have been more fatigued than ever before, even having dizziness, making me feel fuzzy headed most of the time. This is new for me.

Snowbird...the xrays were to show any bone deterioration, which they didn't (remember my rheumatologist first believed I had OA) but he has referred me for an MRI on my left hand. He says that because I have no tissue loss on the fingertips, still have hair on the tops of fingers and my fingers aren't permanently bent...then it's impossible for me to have sclero. (my whole fingers are swollen, but the tiightness of skin mostly affects from the middle knuckle down to nail)

Anyway.... I am not going back to see him, regardless of the MRI results !

Thanks everyone for your advice, I really appreciate it :)

Warm hugs,

#9 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 26 April 2008 - 05:30 AM

I may have answered you before but in case I haven't.......................my sclero symptoms started with peripheral neuropathy of my hands and feet, meaning at first they tingled and then they went numb. I started with a neuro doctor who said it was peripheral neuropathy but couldn't find what was causing it until he had me see a rehumo doctor who then identified the sclero right away. This all took a year. The peripheral neuro still continues and I now have loss of feeling up to my knees that is identified when he does his testing of my muscles and reflexes. I think you need to have a biopsy of some part of your skin if you have any where there is a definite tightening. That's how they diagnosed my sclero, that andwith the blood work. I had terrible tight skin on the top of my feet and they took a biopsy and it came back positive. For a while the numbness would also be intermitten shooting nerve pain anywhere on my body. It would be a stabbing pain from the inside out that would occur on random places on my arms and legs and hurt for a minute or so and then go away and then would hit somewhere else. He started me on neurotin and then Lyrica and I am also on a pain patch that I wear that helps with the pain.

I really hope your next appointment gets you some answers that will be helpful. There is nothing more frustrating than to keep hitting a brick wall with no answers.

Warm hugs,


#10 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 26 April 2008 - 08:10 AM

Hi Karen,

It would be lovely if you didn't have Scleroderma and no one would be happier than I if such were the case.

However, this could explain why it often takes so long for one to get d'xd. If a person isn't in a flare, it WON'T show in the labs.
When a person begins displaying skin changes, such as those that have been mentioned, a clinical diagnosis can be made.

Even though I was so very sick, at the onset... it took 4 years before I was d'xd and I felt as you do... thinking maybe I WAS imagining... even though I really WAS very sick. Thank goodness my husband could see what I was going through, or I may not have persevered.

None of us are the same, when it comes to these diseases.... yet we each know our own bodies and when something isn't right and it's ongoing, WE KNOW.

Please don't question yourself... if you aren't in a flare right now, I'm glad for you.
Right now, I'm not in a flare either.... it's been a long time since I haven't been, too :P

Here are some Huge Hugs for you!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#11 Sheryl


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 26 April 2008 - 11:10 AM

Karen was either of your rheumatologists considered scleroderma specialists? If they weren't then make an appointment with one where ever they are located near you. Make sure you keep a list of things that go on daily, weekly or monthly with different systems of your body. If you are experiencing all this finger, arm and hand pain, have your doctors thought about possible carpal tunnel or tennis elbow causing these problems? My fingers aren't permanently bent and I still have a few hairs on both sides of my knuckles. I have joint swelling and stiffness but not tight shiny skin. Do you have any internal problems going on? Maybe these things can be checked. Have you had PFT's and CT's? Until you exhaust your avenues don't stop trying to find out what is going on with your body. You need to write down all the details even if you think they are silly. Sometimes what you think is silly is very, very important to the doctor checking you. Keep us up to date on what is happening. It just may take a bit of time for a diagnosis. Good Luck to you.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)