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unanswered questions

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vanessa66630
vanessa66630

I have writtenon here a few times but need some very important answers that nobody can give me, I believe I have had PMG for 2 and a half years, went to doctor on many occasions to be told I had depression and was put on citalopram, had all the PMG symptoms but also anarexic type symptoms, nobody listened to this as I am a larger lady,they really worried me as i no longer wanted to go out to restaurants, no longer ate meat and veg, mainly only wanted sweet things and soft things, after a year went to see a mouth specialist as had a small lump on my tongue, he said it was nothing to worry about but said he wanted to talk to me as he did not understand why i was on antidepressants, after talking to me he said you have Polymyalgia, I had never heard of it, went to Rheumy who confirmed it and started me on 15 mg of pred symptoms almost disappeared but not the eating, and no weight loss, then had tooth absess, tooth out  pain killers and antibiotics, went to see another doctor in my practise who was so nice told him i did not feel very good, he sent me for blood test,phone cal ten to midnight by emergency doctor my liver function results were very high, was stopped from going on holiday until they ha come down, decided it must be the drugs, all ok until august when i had spinal problems and was put on gabapantin and pain killers, still not eating, doctor sent me for blood test liver problems again, doctor sent me to liver specialist, have bupa insurance so was seen fast, he wanted to do a endoscopy, which he did he said it all looked ok and he took a biopsy of a small polyp, he said he did not think this would cause my anarexic symptoms, my doctor has given me fortasip drinks to help me. 2 weeks later results are back Oesophageal cancer, you can imagine how I felt, more tests needed to see ho far it has spread, first test done and looks like it has not spread, if this is so I am the luckiest girl in the world, 2 more tests to go before they decide what to do, the whole reason I am writting this is because nobody says they have heard of Anarexia as a symptom of PMG and yet on Google I have read that 30 per cent of people with PMG have this.I have tried to contact prof in southend as I believe him to be best in country but he is away, and I believe all doctors should be aware, thank you for reading this.

0 likes, 16 replies

16 Replies

  • ptolemy
    ptolemy vanessa66630

    Posted

    Vanessa, you seem to have had a really hard time. Before diagnosis I could hardly eat at all although I was always a real foodie. I remember I went out to lunch and could only eat one mouthful and just did not even want that. I don't think I had anorexic symptoms I just could not eat and was never interested in food.  As soon as I started on pred I became hungry all the time.
  • constance.de
    constance.de vanessa66630

    Posted

    You poor thing!  You are going through it.  Your doctors seem to be treating you well.

    Try not to get depressed.  Easily said, I know!  If you need to talk, get something off your chest, keep posting.  There is always someone on this forum who will listen, and you will get advice from our experts.

    Regards and good luck fr Constance. 💐💐

  • Handbrake
    Handbrake vanessa66630

    Posted

    Vanessa, I didn't really notice anything unusual when symptoms first developed,I was probably more conscious of the pain at every moment however,I did crave sweet things after starting prednisolone  and subsequently put on weight.Now I'm aware of it I try to swap sugary things for fruit. natural sugar I know but at least it satisfies the craving for a while. 
    • vanessa66630
      vanessa66630 Handbrake

      Posted

      my problem has been not wanting to eat long before pred, and pred made no differance, the eating problem started at the same time as all the pains, when it says 30 per cent of PMG have anorexic symptoms, where does this come from, no doctor has ever heard of it? thank you for reading my problems
    • lodgerUK_NE
      lodgerUK_NE vanessa66630

      Posted

      Yes they should have heard of weight loss. 

      If they had ever read the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of PMR, they would have seen  'weight loss' in the symptoms list.

    • ptolemy
      ptolemy lodgerUK_NE

      Posted

      Weight loss and anorexia are very different though. Anorexia is a serious mental disorder and I have never heard or read of it being associated with PMR. 
    • VickieS
      VickieS ptolemy

      Posted

      The term anorexia is also used to describe loss of desire to eat, which is what I was talking about when I said I lost a lot of weight before being diagnosed. I didn't consciously decide not to eat, it was that I felt horrible & had absolutely no appetite.
    • EileenH
      EileenH vanessa66630

      Posted

      I'm coming in here very late - I didn't get or didn't see a notification for this thread. I had a bit of trouble with patient,info notifications while I was on holiday and this was obviously one casualty.

      Vaness is quite correct. In 2010, Baskar Dasgupta said in the Diagnosis and management of PMR  in the "Concise guide to good practice" series:

      "The cardinal features of PMR – proximal pain and stiffness with a raised acute phase response – are familiar to most physicians. However, the diagnostic presentation is varied and this may lead to diagnostic error:

      • proximal pain and stiffness can occur in many other illnesses

      • a third of patients have systemic symptoms such as fever, anorexia and weight loss. 

      • a considerable number (15–30%) may have distal musculoskeletal manifestations such as peripheral arthritis, distal swelling with pitting oedema and carpal tunnel syndrome.

      I have come across doctors who insist that the features in the third point do not belong to PMR. However,  whether they want to dispute the interchangeability of the terms "weight loss" and "anorexia" or not - he has used both in his dissertation. 

      I think it is fair to say though that it is weight loss that was either not intentional or associated with a normal appetite that rings the bells for cancer. Many people have eating problems  at any age and for various reasons that leave them not wanting to eat - and the feeling ill of PMR is one. 

  • Nefret
    Nefret vanessa66630

    Posted

    Hello Vanessa, you have been having a rough time, I do hope you find that things quieten down for you now.

    I don't feel that Dr. Google is the best one to consult and I have no idea where that figure came from, can you tell us the reference?

    I was diagnosed with PMR (I'm assuming you mean PMR) in 2002 and haven't ever come across anorexia as a symptom before.  I know that some patients lose weight before diagnosis, but that is hardly the same as anorexia - I would be more inclined to think it was a symptom of cancer, not PMR.

    • vanessa66630
      vanessa66630 Nefret

      Posted

      not very kind, I was looking for reasurance, not a death sentence.
    • lodgerUK_NE
      lodgerUK_NE vanessa66630

      Posted

      No Vanessa, that was not unkind, but a very practical answer.

      Cancer is not necessarily a death sentence and the earlier it is diagnosed the better the prognosis.

      How do I know, I have family  and friends who have had both early and late diagnosis, the early diagnosis are still living.  Am I speaking from personal experience, not at all, just an older person who has watched with amazement the strides made in treating cancer since 1954 when I first lost a close friend to Breast Cancer who was 23 with two children. 

    • Nefret
      Nefret vanessa66630

      Posted

      I was simply trying to make the point that 'weight loss' and 'anorexia' are not the same thing.
    • ptolemy
      ptolemy vanessa66630

      Posted

      Lodger is right, one in three of us will be diagnosed with some form of cancer in our lifetime. The chances of a full recovery if diagnosed early are pretty high nowadays. Loss of weight is considered a symptom. Some cancers are one of the things to be discounted when checking for PMR. I am sure you have no need to worry though. 
  • VickieS
    VickieS vanessa66630

    Posted

    I'm so sorry you're having to go through all this and I hope for the best for you. I also loved my food and totally lost my appetite as I developed the symptoms of PMR, and I lost 10 lbs very quickly, which I did not have to lose, since I'm thin to begin with. To top it off, when I had to take 40 mg of pred to get my symptoms under control, that made me sick to my stomach & I lost more weight, which didn't subside until I was able to taper down to 20 mg. So the answer is yes, anorexia does come with PMR. Good luck!
    • vanessa66630
      vanessa66630 VickieS

      Posted

      Thank you so much for that, this is not a good time for me and just needed a little reassurance, which you have given me x
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