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Progress ...or regression

Posted , 8 users are following.

helenemiles
helenemiles

hello all.

its been a while since I have written .

My journey from my body falling apart last April has been tough ..

I was given a diagnosis of PMR following lots of tests etc aswell as hemachromostasis and osteoporosis šŸ˜¬

In regard to PMR I gave gone 3 steps forward and 6 steps back .

i believe this is because of my inpatience attempting to reduce to quickly ....I've certainly learnt my lesson the hard way šŸ˜ž

During this time I have also lost my sight in my right eye , which has resulted in going back to 20 mgs each time with sight and severe temporal pain vanishing within 24 hours .

4 fractures !!!! Spine ,ribs ,foot and most recent my wrist ..

i was off work for 6 months returning in September , but I have struggled and am worried how I can sustain this . The tiredness , poor balance and severe pain following spinal fracture , which required vertoblasty is awful ...

i have currently been off work again following falling 2 weeks ago (hips awful balance appalling ,but had tried reducing again to 15mgs with rubbish effect )

my rheaumatologist has now popped me on Azathioprine in view of reducing pred (currently on 19mgs pred ) commence on 25mgs 4 weeks once daily then increase to 50mgs .

I would love to hear from any others who have taken AzathioprineĀ 

The other question I have , is regarding severe muscle weakness !!!

although this has improved throughout my journey ,my arm , leg and back muscles are no where near the point where I can carry things ,walk , push pull etc without pain and discomfort .

is this to be expected ?

my vit d levels are now back in the normal range following the 6 week treatment last April which is good .

i have also had a bone strengthening infusion and am now on acreete twice daily .

any advice would be greatly receivedĀ 

best wishes to allĀ 

Helene x

0 likes, 17 replies

17 Replies

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  • tina-uk_cwall
    tina-uk_cwall helenemiles

    Posted

    Hello Helen, I'm sorry that I cannot offer you any advise regarding your problems, hopefully someone with more experience will be along soon. I am however worried about your episodes of temporal pain and loss of vision. Your GP must be informed of this development without delay - I assume you know all about pmr's sister condition GCA. The symtoms you have described are / can be the symptoms of GCA, so report this to your GP. All the best, tina
    • helenemiles
      helenemiles tina-uk_cwall

      Posted

      Hello TinaĀ 

      thank you for your message .

      yes I have been informed of GCA and need to go straight to A&E if it occurs again šŸ˜© It makes you feel so illĀ 

      Its very scary ... But when going straight back up to 20 mgs the pain reduces very quickly Ā and vision restored šŸ˜€

      Staying on 19 mgs now for at least another 4 weeks .

      so much for life begins at 50 !!!Ā 

      take careĀ 

      heleneĀ 

      HeleneĀ 

    • tina-uk_cwall
      tina-uk_cwall helenemiles

      Posted

      Yeah Helen tell me about it. I was diagnosed at 52, 2 and a bit years ago. But I'm not suffering from all the ailments (sounds a bit dismissive, but you know what I mean) you have which must be very upsetting and scarey. None of us want to be on preds but it's very important that we are. I have only suffered one flare when I was attempting to reduce from 9-8mgs. Never again. Since then I've reduced by the dead slow and almost stop method and I'm no down to 5.5mgs. I also always stay on each dose for a good 6 weeks before my next slow reduction.so I'm pleased to hear that you'll be on 19mgs for sometime yet, let the dose really do its job.

      i also take RDA levels of vit d, calcium and magnesium daily for my bones. You say you work, I don't know how you do it! So I assume you are walking about, walking is good for bone density. All the best, tina

    • helenemiles
      helenemiles tina-uk_cwall

      Posted

      hiĀ 

      thank you for sharing your experience too Ā Tina .

      I doubt know how I entered back to work last September !!!! After being off for 6 months .. I'm surprised I wasn't chucked out really ...Ā 

      I have worked for the NHS for 32 years ... My manager has really gone out of her way to look at work adjustments ,but the blips that I've had has been very difficult for mr to sustain this .Ā 

      If I wasn't a working single mum I would of had to consider leaving earlier .... As I'm very aware that I was not able to function to my best ability at all .

      I have a meeting again next week , following this recent period of sickness to review my journey !! Bit scary but have to just accept the little tiny steps and the fact that I can't control what's not in my control (if you get my jist )

      no good me worrying until decisions are made .

      i am walking ... Like a 95 year old lol , the spinal fractures still cause awful pain which effects my mobility , walking , posture .. The more I do the worse the pain šŸ˜¬ But if I stop , get in a comfortable position then this eases .

      take careĀ 

      Helene x

      Ā 

  • EileenH
    EileenH helenemiles

    Posted

    You say you lost vision - temporary or permanent? 20mg is not enough for GCA - and I am far from convinced that azathioprine has a role to play in GCa just to get the pred dose down - there is too much at risk. You cannot force a reduction - neither in PMR nor in GCA and it may be had you not done so you would already be lower, That's in the past - but given you have had flares and haven't really been using a high enough dose I'd say being at 20mg after less than a year isn't bad. But I don't imagine your ehumy would agree with me.

    You could probably benefit from physiotherapy to learn exercises to regain muscle strength and they should have been started earlier really.

    • helenemiles
      helenemiles EileenH

      Posted

      Thank you Eileen for your advice .

      My vision loss was temporary thank goodness .

      I have had Bowen therapy which was really beneficial and certainly helped my balance .But following fracturing L1(which was a real setback as I was feeling so much better in my self !!)Ā 

      my mobility was again restricted .

      have been having physio , attempting to rebuild Ā the muscle tone in my arms, legs and neck .

      im finding this tough due to the back pain , but do what I can .

      you are right regarding the reduction if pred ... I have so learnt the hard way .

      I don't think you realise how vital the dose is until your body reacts so quickly .

      being a single mum I think I attempted to run before I could walk , worried about if I could return to work !!! Etc

      i have had to change my whole outlook and have now accepted that I can't rush things at all.

      as for work I am currently off sick again šŸ˜¬

      But hoping that I can look at a phased return again , with some adaptations , but the lethargy is a tough one .

      oh the joys

      You are right about the dose of pred , my rheumy explained that if I experience severe temporal pain and loss of vision again I need to take 40 mgs asapĀ 

      does that seem the right advice ?

      i have experienced differing advice as my original rheumy left at the end of September and my new one has differing views .

      thank you again EileenĀ 

      hoping that you are well .

      regards

      heleneĀ 

    • EileenH
      EileenH helenemiles

      Posted

      Yes, he has that absolutely spot on, take 40mg and seek a doctor asap.

      Differing view? Nothing new there then! Life would be so much simpler if they could sing from the same hymn sheet!

      Remember that if you are in the UK that GCA is covered by disability legislation (whatever that is worth with the current gubmint) and that rushing will just extend the recovery time. You've learnt a lot of that already.

      It happens to so many people - but there is nothing to compare with personal experience. Let's hope this time it all goes better.

      But if the aza makes you feel rubbish stand up to the rheumy - if it helps you reduce then good. There is someone on another forum who has GCA and is on aza and thought it wasn't helping - until she tried stopping it! But if it doesn't help and makes you feel ill - it may not be worth it.

    • helenemiles
      helenemiles EileenH

      Posted

      Thank you EileenĀ 

      your advice us really welcomed .

      i think the decision was made because of the relapses that I have had needing to go back up to 20 mgs as it seems I do ok at 17.5 then the lower I reduce everything goes to pot again !!! Also the severe oesteoporisis ... the fractures sustained during the last 8 months .

      I can see the logic because of the side effects of pred , but reading the side effects if Aza I did say I was a little worried šŸ˜He has said that he would like to give it a try but very slowly and only to reduce my pred by 1mg every 6 weeks .

      feel like a Guinnie pig at the moment lol

      The side effects of pred far out way the awful pain and frustration of PMR ..without them I think I would have given up the will to carry on by now by now .

      I started this journey with little awareness of PMR , but it's a co poked condition that completely knocks the stuffing out if you in every way imaginable .

      i am so grateful for the advice and support that I have received from this forum,as even during my darkest days the posts from others has given Ā a flicker of hope that given me the determination to accept and be more patient with myself .

      thank you to allĀ 

      Helene x

  • Handbrake
    Handbrake helenemiles

    Posted

    Hi Helen,

    Gosh sounds like your stuck between a rock and a hard place! Haven't heard of azathioprine being used for PMR but know it's used following organ donation usually kidneys and for arthritis in some cases. Sounds like your Gp and rheumy are focused on finding alternatives to reduce prednisolone side effects however,since you've followed your Gp advice with vit d and bone protection etc it might be worth arranging a telephone conversation with your rheumy ( just ring their secretary) or your Gp to express your concerns now you've had time to think about it. Suggest you up your prednisolone dose until you are comfortable but would like them to monitor your blood markers Calcium,vit d and inflammatory markers for improved response. You can always look for alternatives if there's little or no improvement but the pain relief could be a godsend! Take care and don't be scared to call them x

    • helenemiles
      helenemiles Handbrake

      Posted

      HelloĀ 

      I am back up on pred following a flare 3 weeks ago currently 19 mgs which I'm not moving from for the next 6 weeks .you are right he is I think looking at alternatives due to the osteoporosis .

      I have shared my worries regarding this new med , and the rheumy appears to be quite reasonable .

      my doctors have been brilliant , and on morphine patches and oromorph for the post fracture pain as I was having to pop tramadol like smarties .

      The right dose of pred is essential for me to function ,despite the weight gain, awful night sweats ...Ā 

      Appreciate your time spent to get back to meĀ 

      thank youĀ 

      HeleneĀ 

    • EileenH
      EileenH helenemiles

      Posted

      Have they considered Forsteo (teriparatide) along with the pred? It actually builds bone unlike other "bone protection" meds and they are used together.Ā 

      It's less I have worries about the azathioprine than being slightly sceptical it will achieve a great deal and unlikely to be quickly though at least the rheumy realises that. MTX is said not to show a positive balance in terms of lowering the pred dose until after a year and I'm unconvinced that AZA is much different if it does do anything.

      Look for the 2015 Recommendations for Management of PMR in this link

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

      where they cite the evidence for MTX, admitting there is no evidence of reduction in adverse events with it, and say there are NO studies on other conventional DMARDs (i.e. AZA). Has your rheumy seen these?

      Though to be honest - my suspicion is that he might be thinking along the "not just" PMR lines and is looking at DMARDs for that reason.

    • helenemiles
      helenemiles EileenH

      Posted

      Thank you Eileen for this information .

      I will certainly share this advice with him .

      i certainly don't want to add another medication if it's going to have no benefit at all šŸ˜©

      Your help is so gratefully received .

      heleneĀ 

    • helenemiles
      helenemiles Handbrake

      Posted

      HelloĀ 

      thank you for your advice , I really appreciate it .

      I am staying on 19 mgs ... And have no intention of reducing quickly and the rheumy also agrees with this following the flares that I gave experienced .Ā 

      At the moment I'm feeling so much better , some PMR niggles and rubbish muscle tone .Ā 

      It's the post fracture pain which needs managing better as this impacts big time šŸ˜©

      The patches and oramorph do help but not ideal long term . I am waiting to see be seen at the pain clinic .

      if I don't do anything I can be quite comfortable but , start moving ,walking , driving , sitting for short periods of time increases the spinal pain .

      my vit d , calcium etc are all good at the moment , inflammatory markers last week good .

      you take care too , and thank you again .

      helene x

  • noninoni
    noninoni helenemiles

    Posted

    Hi Helene,

    Those fractures sound horrid so I do hope one of the meds will help you build your bones back.

    One easy exercise to build up your balance muscles: Ā put one foot behind the other, toe to heel, and try to balance on your 2 feet like this for 30 seconds if you can- you may have to start with 2 seconds!- have something Ā nearby to grab quickly in case you lose your balance. Ā Then switch your feet and repeat. Ā 

    Ā  Ā  Ā  There are little "balance" muscles on the sides of your lower legs which you need to build up in order to keep your balance, and this exercise will help build them up. So repeat this exercise every other day. Ā 

    • helenemiles
      helenemiles noninoni

      Posted

      Thank you for your advice šŸ˜€

      The spinal fracture and ribs were the worse .... And I'm still having to rely on morphine patches and oramorph šŸ˜Ÿ

      But I am able to mobilise and it's so much better than it was , just going to take time I think .

      heleneĀ 

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