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PMR Hand Pain

Posted , 13 users are following.

Dave-California
Dave-California

I have been busy and miserable with PMR since February of this year and I find it very helpful to read all the variations that occur with others who have this disease - this is a really great blog site. 

One issue that I have not read much about (or maybe I just missed the discussions) is the severe hand pain that occurs with PMR – it seems that most discussion is regarding the medication effect on the arm and leg joint pain (that I indeed have). 

I am finding that as the prednisone (and in my case, also methotrexate) seem to be reducing the pain much earlier in the day or almost completely down to a very minor ache – the pain in both hands is not reducing until much later in the day and starts to recur in the late evening, making getting to sleep uncomfortable.

 

In the morning the pain and lack of muscle control is such that sometimes I am unable to open a jam jar lid or the front door handle – and it has severely reduced my ability to play favorite sport - racquetball. 

My current sed rate is down to 25 and I take methotrexate 20 mg (once per week) and in weekly steps I am down to 10 mg of pred (per day).

 I would appreciate comments by others who still have, or have passed by the hand pain issue of PMR and how they have handled it.

Thanks everyone

David

1 like, 34 replies

34 Replies

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  • denise76179
    denise76179 Dave-California

    Posted

    Hi David

    I have some mild hand pain from time to time and find paracetomol does the trick for me.  I am down to 8mg prednisone/day and I know what you mean about jar lids and other muscle requireing jobs - makes one feel so useless but we will just have to grin and bear it for the time being.  I have a couple of aids that are very useful it is a plastic hooky thingy that lifts the lid and releases the pressure &/ or some caravan/boat shelf non slip  lining that makes holding the jar steady much easier  other than that I sympathise as we have all probably had that pain at some stage.

    • Dave-California
      Dave-California denise76179

      Posted

      Hello Denise,

      Yes - i've asked my rheumatologist about taking paracetomol (Tylenol here in the USA) but it seems that she does not want me to cover up the "pain" as it is only the patient's reponse that lets the doctor know what is going on and relate the physical response of the body to the blood test results.

      So - I guess I'll take your advice and buy some 'sticky' stuff to improve my grip and hope that the drugs get rid of this disease.

      Best - David

  • bedilia
    bedilia Dave-California

    Posted

    My PMR started with severe pain in my right wrist and hand.  At first I thought I had "sprained" my wrist.  I even started wearing a splint.  I went to urgent care to have it looked at and they did take an xray, but nothing significant was found.  So I continued to use the splint and took Tylenol or Norco for the pain.  

    Eventually I started experiencing pain in my joints, bones and muscles.  I was also running a low grade temp.  I was in utter agony!  When I finally tested + for auto immune disease the dx of PMR was made.  I was put on a titrating schedule of Prednisone.  At first everything was okay, but about 1 month into the titration I had horrible problems seconday to the Prednisone.  

    I eventually got off the Prednisone.  I continue to have myalgia but Tylenol and Norco help me keep my sanity.  I still have pain in my hands and also find opening jars, trying to pick items up etc difficult.  

    This is a terrible disease that not only robs you of your mobility but I have found my sanity sorely tested.  Hope my comments help.

    Christine

    • Dave-California
      Dave-California bedilia

      Posted

      Hi Christine - was it your doctor tht recommended the Tylenol and other pain killers - or did you just prescribe those to yourself ?

      Did you take them on a daily basis with the pred ?

      Do you still go to a doctor and have regular blood tests since you've been off the pred ?

      Sorry to sound like the 'spanish Inquisition' but I'm wondering what will happen when I drop the pred to a level that I can stop taking it and how over-the-counter meds work to allow a reasonable day without too much pain.

      David

    • bedilia
      bedilia Dave-California

      Posted

      David, I have been on and off "pain killers" for years, for what I thought was degenerative arthritis in my spine and joints.  At one time I was going to see an anesthesiologist for pain management.  I have had numerous steriod injections just about everywhere I hurt.  At one time I was also taking NSAIDS, which did help.  However, in 2009, I was put on "blood thinners" secondary to Pulmonary Emboli and atrial fibrillation, and can no longer take NSAIDS due to the increased possibility of bleeding.  Also in 2010, I had weight loss surgery, a partial sleeve gastrectomy,  which definitely rules out the possibility of ever taking NSAIDS again.  

      So I turned to Tylenol and when that didn't even begin to relieve my pain, my PMD prescribed narcotics for me.  I see my PMD every 4-6 wks if I am having problems or every 2-3 months if I am stable.  I also call him in between to let him know how things are going.  He orders labs whenever necessary and if I want a certain lab done or retested he will order it for me.  

      Right now I have been off the Prednisone for about 4 wks.  It hasn't been easy but I'd rather manage my pain with narcotics and Tylenol than be on Prednisone.  Since I have a history of on and off Prednisone use from the age of 11 years old I am EXTREMELY sensitive to this drug.  This is MY history and would not dream of telling anyone that they should do as I have done.  I happen to have 42+ years experience as a registered nurse, who also happens to be fortunate enough to have the PMD I have, both as a patient of 13+ years and also having worked with him in my local hospital for the same amount of time.  It is a very rare situation to have this kind of relationship.  I trust him and he trusts my judgement and is willing to listen to me!  I love my Dr. Timothy Killeen.....he has saved my life on more than one occasion.  There have been times when I was ready to throw in the towel, but he always tells me "it's not time yet, Christine"!

      If you have any other questions, don't hesitate to ask me.  I love to educate.  It is my purpose in life!

      Christine     

    • EileenH
      EileenH Dave-California

      Posted

      If you reduce the pred to a level that leaves you in pain it means the underlying autoimmune disorder that causes the PMR is still active and the inflammation is coming back. Many people find tylenol doesn't do anything for PMR pain - nor do the heavy narcotics that are associated with a lot of risks too.

      However - I can only say I'm glad I have doctors who realise that "covering up the pain" is often needed to have a decent life. Chronic pain is a vile thing and hard to live with.

  • heather39822
    heather39822 Dave-California

    Posted

    As a new PMR patient, I wondered if fellow sufferers have a problem with cramp? I am plagued with cramping feet (sometimes up my legs), and yesterday for the first time this went into my hand. Could this be caused by the PMR, the prednisolone (now at 35mgs) or is it coincidental? I have started taking magnesium supplements, but wondered if anyone had other suggestions on how to reduce cramping if it is indeed linked to the condition.
    • bedilia
      bedilia heather39822

      Posted

      Heather, I too have had cramping.  Sometimes it is so severe, it brings me to tears.  I have always attributed it to "low potassium".  I take diuretics for another issue and even though 1 of them is K+ sparing , my K+ level is low at times.  

      Once again I try to use diet to increase my levels.  Prunes have more K+ than a banana, so I eat a few prunes when I start cramping.  Bananas are hard on my stomach so I only eat them once in a while.

      As far as the PMR/steriod connection goes, steriods can deplete K+ stores as well has cause increases in sodium, which accounts for the edema a lot of people experience while on steriods.  

      Christine   

    • Oregonjohn-UK
      Oregonjohn-UK heather39822

      Posted

      Hi Heather,  I went thru' a period when I started to get the ache in my wrist, and if I tried to use my hands, perhaps using a little too much effort , I got cramp in my fingers which persist for several hours, not the same as normal cramp were the muscle 'locks' up, but is painful to relive and then stops.  This 'cramp' is not 'unlocked' but is relieved by rubbing or moving my fingers but then it starts again shortly after.   I have reduced it by not attempting to over exert my hand/wrist but it's not that easy!
    • denise76179
      denise76179 heather39822

      Posted

      Yes from time to time I get a bad cramp in my feet .  I then take a magneisum tab and drink lots of water and it goes away and does not seem to return until i do a pred reduction then sometimes the cramp comes back.  I have got a bit proactive now and have the Mg tab and lots of water on the first couple of days of reduction seems to keep the cramping under control.  Is it Mg we need or Potassium..... maybe both.
  • Oregonjohn-UK
    Oregonjohn-UK Dave-California

    Posted

    Can't help with the hand pain except I have similar problems.  I was diagnosed with PMR under 4 months ago.  The pains in the leg, hips, shoulders and neck etc all reduced dramatically within 1 day of starting the preds (30mg), within a week my GP reduced them to 25mg and 10 days later to 20mg followed by 15mg.  At this point I was issued with 1mg tablets as well, and started at 13mg to be taken for 28 days and then reduce by 1mg for another 28 days etc.   At the same time I was given a whole load of tablets for the side effects.  At a point between reducing from 13mg down to 12mg I noticed my wrist and knuckles were aching in the morning plus similar problems with opening and holding things.   I have found that drinking copious amounts of water seems to help?  I too would be interested in any others with this wrist effect and  have found any answers.
    • joey2
      joey2 Oregonjohn-UK

      Posted

      There is a possibility that you could be suffering from Gout since you mentioned it goes away when you drink copious amounts of water or you may have osteoarthritis in your hands.  Prednisone does not work for me with those issues. Other health issues can accompany PMR. 
    • Dave-California
      Dave-California Oregonjohn-UK

      Posted

      Thanks for your reply - your story sounds identical to mine with slightly different pred ammounts. Yes - I do get slightly earlier relief in the day the more liquids I drink. My doctor has recommended the weekly Methotrexate that I'm now taking to reduce the hand pain as apparently pred may not have such a rapid effect. Joey's comment below regarding gout may be valid - but I think my doctor indicated that this can be determined by interpretation of the sed and c-reactive protein blood tests - but I will check into it again at my next doc appt.

      Best - David

    • pnjmj
      pnjmj Dave-California

      Posted

      I have increasing hand and feet pain as I reduce prednisone.  I have both gca and pmr. I started at 60 mg pred. Now I'm at 5 mg.  From about 10 mg, I began having pain in the hands and feet.  It appears to be a side effect to the prednisone decrease for me.  My rheumy prescribed naproxen which helps and also helps the continual achiness I feel in my thighs because of reducing prednisone.  I've found if I move around and walk a bit my feet begin to loosen up and not hurt as bad, same with my hands.  I got some orthotic sandles to help support my feet and make it easier to walk.  But I'm pretty sure, with me, that this pain is a withdrawal symptom rather than the disease itself.
    • bedilia
      bedilia pnjmj

      Posted

      As you titrate down off the Prednisone there is a very real possibility you will experience "steriod withdrawal".  It can be just as painful if not worse than trying to get off both legal and illegal drugs!
    • pnjmj
      pnjmj bedilia

      Posted

      Yes, I've noticed this.  The withdrawal symptoms at the lower levels of prednisone are different than they were on the higher ones.  I have nausea and pain in hands and feet and thighs, and mental disturbances for the first two weeks. Then things taper off in the third week a little.  Then I reduce again.  I'm set to reduce to 4mg next Monday.
    • EileenH
      EileenH pnjmj

      Posted

      Spreading a 1mg reduction over about 4 weeks helps avoid the withdrawal problems which often appear to be the same as a PMR flare. I have posted one several times and is in this thread:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      No decrease should be more than 10% of the current dose - and even that is too much for some people. By spreading it you go back to a dose that was OK inbetween and the body gets used to the idea it is being given less after a  few new doses. It has worked for a lot of people.

    • Oregonjohn-UK
      Oregonjohn-UK Dave-California

      Posted

      Hi David, had the results of my latest bloodtest and there is no indication of Gout.  My Dr. puts it down to either the Preds or Omeprazole side effects.  I have reduced the Omeprazole and hope the wrist/hand aches and sometimes cramps in my fingers improve in time!  Seems to be something that effect most of us in one area or another - we are all different (Thanks goodness!)
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