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Reporting on Eyeballs and PMR and also Thumb Base Arthritis.

Posted , 9 users are following.

paula63201
paula63201

Just an FYI, as it might help some of my fellow PMR travelers.

Am scheduled for cataract surgery on June 2 (left eye) and June 16 (right eye). 

Had an appointment with Rheumy today. She suggested I double my dose of Prednisone on the day of and the day after surgery (in my case I will be on 5 mg, so doubled = 10 mg) then on the third day to drop back to the 5 mgs.

She is happy with my sloooow rate of reduction, which is about 1 mg every 6 weeks or so at this mg level. She said that although I had passed the critical 7 mg level vis a vis my body kicking in, she felt caution was the way to go.

Concerning the base of my thumb arthritis/pain/groan/ouch issue in my Rt (dominant) hand: she did an ultrasound and while seeing the ultrasound, shot my joint up with steroid and gave me a hard brace to wear for a week.

Told me to return in 2 months. My SED rate is 2 (normal). I have those done monthly.

Still on Gabapentin (300 mg at night). Rheumy says it stabilizes the mood, among other benefits. I must say, I sleep through the night 7-8 hrs.

She insisted on exercise and in my case it is rowing, which I do for 3 kms 3 x per week on a Concept II Rower. This is a non impact exercise that I have been doing for a number of years. (We own a rowboat, so to keep in form, I need to continue.) I have no problems with this. I also do yoga stretches every day. And I walk and garden and walk around the office.

Counting down since December 2013......

 

4 likes, 16 replies

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  • tina-uk_cwall
    tina-uk_cwall paula63201

    Posted

    Morning Paula, good luck with both of your eye operations in June. And, it's great it is to hear of yet another Dr who takes a more liberal (liberal isn't quite the word I'm looking for here) approach to pmr treatment plans. Luckily My rheumatologist and GP are like yours and I have never, thank god, feared visits to a clinician that just wanted me off the preds regardless. I wanted to ask you about this pain in your thumb. About a year pre PMR symptoms I developed pains in both my thumbs, specifically were the thumb joins the hand. It was always worse in the morning but on the whole cleared up throughout the day. Since I've been on preds the pain disappeared, however, now I'm down to 8.5 and hopefully in 2 weeks time begin my slow taper from 8.5 to 8, the pain has returned. It is by no means as bad and I put a lot of it down to holding a tennis racket and gripping all the gardening tools which I do everyday weather permitting. I just wonder if there are others out there who also experienced pain in their thumbs ore PMR diagnosis. I was also diagnosed December 2013, but had symptoms from the September. Good luck with your rowing, I walk my dog a lot and I also have a treadmill which keeps me fit. Regards, christina 

     

    • paula63201
      paula63201 tina-uk_cwall

      Posted

      Hi Christine,

      Yes, the pain is where the thumb joins the hand. It came on sort of suddenly, when I dropped from 7.5-7, I think. Earlier, in my PMR journey, I had a few pans and the Dr. had me go for xrays of my hands and told me I had pretty severe arthritis there. The pain went away on its own at that time. I went to the ortho, who did another xray and gave me a soft brace to wear at night as the pain was worse in the morning. The soft brace helped overnight, but regardless of how long I wore it, got worse throughout the day.

      I went for my regular visit to the rheumy and told her about it. This time the rheumy gave me the shot in the joint (ugh) and told me to wear a hard brace that goes from my mid lower arm to my thumb along the inside of my arm. I am to wear it all the time for 1 week and then to use it when I do anything like gardening and putting stress on it. It is less painful after wearing the brace last night and after the shot. Took it off to write.

      I think the inflammation was controlled by the higher dose of prednisone. Since it is only bad in the dominant (right ) hand is probably aggravated by something I did to it.

      Good luck with yours. Glad you can still play tennis with it!!

      BTW, I got a Bakers Cyst behind my knee in August 2013 (after rowing a boat for 2 hrs), the cyst ruptured, then I got PMR symptoms in September and was finally diagnosed December 2013. We seem to be on a prallel track! Where are you?

    • margaret22251
      margaret22251 tina-uk_cwall

      Posted

      Hi Christina, yes i find when i knit the pain comes in my thumb when i asked the doctor, she thought it was a bit of screws(arthritis) so told me to take pain killers.

       

    • EileenH
      EileenH tina-uk_cwall

      Posted

      Yes - I have thumb pain, at the base down into the wrist. It was always worst when holding things, I couldn't wear rubber gloves (there's an excuse) without getting cramp, and then I had tendonitis which tracked sort of diagonally to the outside of the elbow. It faded slowly at 15mg pred but always returned if I was having a flare whatever dose. I've been down to 4mg for a while, and for the last few weeks I've noticed it a bit. I've just had a couple of days at a higher dose and its gone already - so back to 5mg for a while I think.

      One rheumy dx'd my PMR in the early days as arthritis and sent me for x-rays - which were never reported to me so I have no idea what they showed. But the other bits she claimed were arthritis have all gone too and no-one has mentioned arthritis since.

    • VickieS
      VickieS tina-uk_cwall

      Posted

      Christina, I haven't had pain in my thumb, but I have had it in the joint at the base of my left big toe. In fact, that was one of my first symptoms. It came on suddenly for no reason and was extremely painful. I wondered at first if I had gout. It went away after a while, just about the time I developed pain in the muscle of my celf on the same leg. It wasn't until a year later and a couple more of these bouts of pain there and elsewhere that I was diagnosed. I haven't had a problem since then (Sept, 2014) until just recently when I've felt it a little during the night, but it seems to go away. Watching this closely as I taper.

       

    • tina-uk_cwall
      tina-uk_cwall paula63201

      Posted

      Hello Paula, sorry for not replying earlier but I've been gardening all day and then when I came in and opened my laptop I simply couldn't open the forum?

      it's interesting to read that Margaret has pain in her thumb when knitting because I do too, and Eileen's thumb pain returned on lower doses, because mine did, or did it, yes I reduced 4 weeks ago now but I've been gardening, playing tennis, knitting so could it be simply because I've been using it more. I suppose I'll wait until my next reduction to see if the pain increases.

      Paula, I can't remember being unwell as such, but I too experienced my first symptoms early September. Like many, I woke up one morning and the pain in my neck was unbelievable. By the December I was still undiagnosed and experiencing pain almost all over my body. I was in do much pain I cried and cried and was lucky if I got 2 hours sleep a night. I saw a rheumatologist and he diagnosed PMR and the rest is history. Tapering was great until I experienced a flare in December last year when I attempted to reduce from 9 to 8, and I'm now down to 8.5 and am doing fine. I can't wait to get to 7 but I don't start my tapering down to 8 for another 2 weeks. I am following Eileen's dead slow and almost stop method now but only reducing by .5 because I don't want any more flares!

      i am 54 years old and 

      i live in Cornwall with my husband Bob, and our dog Katie, we moved here 4 years ago from Canterbury in Kent and we run 2 holiday cottages. We moved here with my mother but unfortunately she died 8 months later so for me that was a very sad time. My original GP (that couldn't for the life of her think what was wrong with new) has been ditched and I changed surgeries where I have a fantastic young GP who knows all about PMR, so I count myself very lucky. I wish you all the best with your PMR recovery journey and hope you reach the finish line with no hiccups. Regards, christina 

    • paula63201
      paula63201 tina-uk_cwall

      Posted

      Hi Christina,

      No worries about your answering earlier. I WISH I were gardening, but was at work, instead. Knitting became a problem for me also. Decided to shelve it until the thumb felt better.

      Sorry to hear about your mother and also of your flare. I have been fortunate to not have experienced one. At this time reducing at .5 mgs every 6 weeks.

      Those days of undiagnosed PMR...AGONY! Me too, no sleep for nights on end. Waiting for the next time I could take that max dose of Ibuprofen and to the point of a bleeding stomach! Watching the clock at night, counting the minutes. So so awful!! And then the useless Tylenol (Paracetamol), the megadoses of Gabapentin (misdiagnosed by a dim earlier rheumy as having Fibromyalgia). So glad to have finally found a Rheumy who knew what was wrong with me!

      I have family in Cornwall, on Bodmin and am familiar with Canterbury, having gone to school in Westgate-on-Sea. I live in the US, now. My kids are grown and I live with my husband and lovely she-dog Labrador, who takes us out on long walks and to the river and bay for her swim opportunities!! Cheers,  Paula

       

    • margaret22251
      margaret22251 tina-uk_cwall

      Posted

      Hi Christina, how long were you on steriods before you started to reduce, as my doctor wants me to reduce because of side effects, but i have been on steriods(10mg) since January 2015. Thanks Margaret
    • tina-uk_cwall
      tina-uk_cwall paula63201

      Posted

      Hello Paula, well coincidences hey? Yes, again pre diagnosis my rubbish GP, ditched at diagnosis for a brilliant one also prescribed me ibuprofen and when that did nothing gabapantin and when that didn't work either told me to take more!!

      Again, coincidences, you having family in Cornwall and having lived in Kent and having a dog too. My dog is a mad border collie with behaviour issues but we love her so much and she is really so beautiful.

      anyway, if you ever come over to Cornwall to see your family, let me know and we could met up. All the best, christina 

    • tina-uk_cwall
      tina-uk_cwall margaret22251

      Posted

      Morning Margaret, my rheumatologist has had me reducing pretty much in line with the Bristol method. I was on 15mgs for 6 weeks, 12.5 for 6 weeks then 10mgs for 6 months. I then was on 9mgs for 6weeks and it was when I attempted to reduce from 9 to 8 that I experienced a flare. I then attempted to bring the flare under control by upping the dose to 9 for 2 weeks then reducing back down this time to 8.5 but I flared again. I think I just rushed this whole flare/recovery period, so I then put myself back up to 10 then reduced this time by .5 every 6 weeks. I am now down to 8.5 and hopefully in2 weeks time start my .5 reduction to 8. Since my reduction from 10 following the flare I use Eileen's go slow and almost stop method but as I said I only reduce by .5 each time. For me it's all about having a good quality of life now and not rushing things. If I hadn't rushed this whole flare/recovery period who knows I might have been lower by now, instead that whole period went abit out of control and the result was I had to up to 10. 

      Why don't you try Eileen's plan, it's so slow that I think the theory behind it is to trick the body into accepting less without really knowing. All the best, christina 

    • margaret22251
      margaret22251 tina-uk_cwall

      Posted

      Good afternoon Christins, i might leave it a few days yet as i am getting some pain whrn i put my glass on behind my ear, and had a little ache at the temple, so dont want to reduce too soon, many thanks.
    • beatrice74480
      beatrice74480 EileenH

      Posted

      Yes the thumb pain in both hands is awful at times and hands swell.I have had a diagnosis of arthritis but it helped when on a higher dose of Pred. I take paracetamol and use Ibuprofin gel off doc it does help.Does anyone get pins and needles too. it's annoying not being able to hold a book for long. Seeing a Hand man June 3rd.
    • EileenH
      EileenH beatrice74480

      Posted

      It's the PMR - I couldn't hold anything! A Kindle is a wonderful help, it doesn't weigh as much and turning pages is so easy! I used to rest my books on a cushion or mini-lecturn.
  • Oregonjohn-UK
    Oregonjohn-UK paula63201

    Posted

    Add my good wishes with the ops.  I stopped reduction for several weeks before and after an op that I had to have back in December '14.  I just keep at the dosage I was on 4 weeks before and didn't reduce again until after the op and some complications after - I have learnt to 'listen' to my body and have found this invaluable.  I had no problems but I was at 10 mg not 5.
    • paula63201
      paula63201 Oregonjohn-UK

      Posted

      Hi Oregonjohn,

      Thanks for your helpful comment and the good wishes!! I think I will hold off reducing for now until after the op. Hope you can see clearly now! Am dreading the poke in the eyes.

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