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???? My diagnosis

Posted , 5 users are following.

helenemiles
helenemiles

hello everyone.

i received a letter from my rheumatologist yesterday following my initial assessment. The results of my last bloods have shown quite high heamaglobin ..... This has been evident over a number of years .... Not picked up by my GP .

further tests have shown that I have a condition called Haemochromatosis ... A genetic disorder which causes the to absorb an excessive amount of iron from your diet .

 Her initial investigations from blood only has led her to conclude that there are no signs of rhea motion arthritis for instance .

i am being referred to a haematologist for assessment and best treatment options.

I have not fully researched this condition , but I do still feel that I have presented with symptoms of PMR .

my Dexa scan is on the 13th May , MRI scan of lower back and pelvis 29th of this month .

from the info I have looked at briefly I'm not convinced that this condition would of attacked my body in such a way .......

any thoughts would be appreciated .

helene 

1 like, 8 replies

8 Replies

  • tina-uk_cwall
    tina-uk_cwall helenemiles

    Posted

    Hello Helena, I am no Dr so cannot comment on their diagnosis, but I have just looked up the condition. The t 2 symptoms that are similar to both conditions is fatigue and joint pain. However, the treatment for each condition us totally different. The pain of PMR reduces substantially with prednisolone, whilst the symptoms of haemochromatosis reduces as the excess iron is removed from the body.

    i would have thought that each of the treatments used would help diagnosis and therefore rule the other condition out. however, I don't suppose it's inconceivable that you could be suffering from both conditions? 

    All the best. Christina

    • helenemiles
      helenemiles tina-uk_cwall

      Posted

      Hello Christina 

      thank you for replying .

      I have only had a little look , but I too wonder if I have been the unfortunate one to present with both conditions .

      My response to pred has been amazing .... My pains both boney and muscular have reduced by 75 % can be comfortable if I rest and do nothing . My 2 attempts of trying to reduce have been awful and has took be back ..... Feeling poorly , significant pain , poor mobility, flare ups particularly the joint below my big toe , hips !!! I gave been back on 20mgs and can say for the first time in weeks I have felt myself ....despite pain and discomfort which increases on exertion or if I try and do something once the pred kicks in.

      the muscle weakness in my arms appears to be improving and the awful muscular pains in my upper back appear to have faded . I am still experiencing deep hip pains following walking etc 

      i have also experienced that different parts of me appear to flare at different times .I am convinced that the awful sweats are very significant to a flare up ....

      I have had to be more patient as I have now realised that folowing this 'alien invasion ' that has swept through my body like a tidal wave .... Any activity is followed by pain and discomfort .

      i do feel that I am making progress but it has been quite a difficult journey.

      Helene 

    • tina-uk_cwall
      tina-uk_cwall helenemiles

      Posted

      You know what helene, that is precisely what living with PMR is all about, it's about knowing our limitations. 

      Maybe once you start treatment for your haemochromatosis your whole well being will improve also. I say that because I have just been prescribed high blood pressure tablets. I have successfully tapered down to 8.5 and I didn't have any return of PMR type pains, great! However, I had a constant ache at the back of my neck that always left me worrying if it could be the beginnings of a flare, but I took the first dose of my blood pressure medication and hey presto the ache in the back of my neck has gone!!!

      when I spoke with my friend who is a Dr she said that many people report an ache in the back of their neck with uncontrolled and untreated high blood pressure.

      the point I'm making is that when each medical problem we have is being treated and brought under control it causes less stress to our bodies overall and our bodies in turn are more harmonious (heavens, don't I sound happy clappy, but you know what I mean). And, hopefully as each of your conditions respond to their individual treatments, you will in turn feel much better.

      another point, you have experienced numerous flares, now this could be because you are not managing the dose and tapering regime correctly, maybe your Dr is pushing you to reduce to quickly and/or by too large a dose drop, I don't know, but my rheumatologist used almost to the letter the Bristol PMR plan and when I got to 10mgs was happy for me to follow Eileen's go slow and almost stop method which I follow, but only ever reduce by .5 not 1mg. But there is a rule that we should never attempt to reduce if we are under the weather, or in trauma and if you think about it, your body to a degree is under considerable stress what with your currently untreated  haemochromatosis so any attempt to reduce has been met with resistance hence the flares. Just a thought! All the best, christina 

    • pat73046
      pat73046 helenemiles

      Posted

      Hello Helene, I am so sorry to hear of the new added diagnosis. I wanted to ask you what your hip pain felt like to you. In 2008 when I had first been diagnosed it was because the pain in my hips made it unbearable to stand. It felt like ground glass in my hip joints ; especially going up and down stairs. I probably had this for at least a year before diagnosis because I had seen orthopedic doctors for various joint tendonitis over a period of a year. Treatment was Prednisone injection. This helped for a short time but then night sweats started . When someone finally checked my SED rate--med. Doctor then I was given PMR diagnosis. I never had shoulder enviolvement with the first episode. Hip pain stopped after hip replacement. I. Did have extreme fatigue but pushed myself to do things in the house. I should have read more on this site then because I never knew how much rest could help.Two months after diagnosis I was using a walker and on disability from work but still trying to mop kitchen floor. Crazy! Sorry to ramble on . Trying to make point to have hip pain evaluated if it continues Or gets worse. Also rest as you can ,seems to make your days go easier. No doctor ever told me to take it easier or rest. I would have listened. Thus forum is wonderful for practical advice. I mean the other members Mrs.O, Eileen, etc. Not myself as I only started signing on with this episode in 2015. Whoops. Just reread your first post about MRI coming up so you are getting it checked. Just did not want you to have same prob as I did. No doctor realized I had avascular necrosis of both hips. Probably had it for at least six moths before l had it checked out. Treatment is hip replacement. Hope you feel better and rest. Pat
    • helenemiles
      helenemiles tina-uk_cwall

      Posted

      Thank you Christina for your reply , it is reassuring to have a forum to share concerns and worries with others. 

      You are right regarding the reductions in pred ..... And I am sticking to the 20mgs dose until I feel much better . 

      The mornings are difficult ... But am finding I am feeling better late afternoon as long as I don't do to much . 

      I really appreciate your support .

      helene 

    • helenemiles
      helenemiles pat73046

      Posted

      Hello Pat 

      thank you so very much for your reply .

      my hips have been giving me Jip for along time .... I experienced pubis dysphunction whilst pregnant with my little boy in 2002 . They never really improved but I learnt to live with the discomfort . Initially I found that if my hips were out of line the pain was awful ... Once inline I could be reasonably pain free . It was as if the ligaments on my inner thighs were being ripped , pulled . Over the last year they have worsened ... Difficulties getting up from chairs ... Sitting position lots of deep aching . 

      The lower back pain I have experienced has only come on as a result of this whole body invasion ..... 

      I had a spinal fusion in 2002 and have not had lower back pain since . 

      My hips now ache like mad .... But since being on pred I have found my hip movement much better . Last week I sat crossed legs on the settee .... I can not remember when I was last able to do this . I have noticed that my hips are noisy , clicky grinds . I do have discomfort going up stairs , especially if I do not ensure I can keep them aligned . 

      I do certainly feel like an old crock .... My body has aged 20 years since January .

      thank you so much again , can't tell you how grateful I am for your support .

      quite a lonely place when you have no idea what's going on with your body !!

      but very comforting knowing that I can share my woes and concerns on this forum .

      it has helped me so much during this tough time .

      helene 

  • EileenH
    EileenH helenemiles

    Posted

    Helen - if I remember rightly one of the ladies who does a lot with the Scottish PMRGCAUK charity who was diagnosed with GCA was later found to also have haemochromatosis, something that was familial in her case. Yes - you can have both!
    • helenemiles
      helenemiles EileenH

      Posted

      Thank you Eileen 

      I really appreciate your support .

      I do need to research this new condition more .... When I have the head space to do so .

      just another sign that I now need to listen to my body and adapt and adjust .

      thank you again .

      helene 

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