I need some help please

Posted , 2 users are following.

It was suggested to me by PMR/PRO that I look on this site for some help.  In April while I was on a cruise I woke one morning and I could not lift my right arm.  Five days later I could not lift my left arm then my buttocks were so sore and I could not bend down and could not get out of bed with out the help of my husband. When I came back I had blood tests done and my GP said I had PMR.  She started me on 20mg Prednisolone.  I seemed not to react very well to the steroids so after a week she told me to cut down to 15.  Although most of the pains went away at 20 when I went to 15 I felt I could not cope. People on the PMR site told me I should not have come down so quickly.  I am up to 20 again but still feel awful.

Four years ago I had problems with sores in my mouth...not thrush.  After investigations I was told it was auto immune and that I also was Vit B12 and  Zinc deficient. I get injections for B12 and take zinc supplements twice a day.  Two years ago I had invetigations for pains in my stomach.  Gastritis, again auto immune.  I was given Omeprozole but found it did not help.

Since this diagnosis of PMR I have pains in my gut almost all of the time. It wakes me up in the middle of the night... I don,t sleep very much and am exhausted all the time. My hands are strange.  Tingly and numb.  I keep dropping things. Headaches are not so bad now.  My blood pressure is  sky high... I take Losarten. The thing is I feel I should be feeling a bit better on 20mg steroids.

My GP has referred me to a rheumatologist.  I live in Yorkshire,  My preferred hospital has no appointments and the ones I can get into are end of August and beginning of September.  I will go privately if I can get in touch with my GP to arrange it.

 Odd thing when I woke up yesterday I had pain in my calves

Sorry this so rambling but I am wondering if this could be something else

 

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  • Posted

    Hi

    A lot of what you describe it what I suffer from and others I know.  Definately sounds like Vasculitis and its flaring.  Rhuematoligst sounds a good call by GP, how long have you to wait?  I think you need a nephrologist appointment or someone who looks after vasculitis patients.  Have you contacted a help group/information group called "Vasculitis UK"?  If not you should do, they saved my life many a time.  Have a free helpline etc and manned by great knowledgeable people.  Tingling etc definately phone them or go on their websites, they have 2.  You will get all the advice you need there and also fellow sufferers of all types of Vasculitis.  Belive me you need to contact one of these sites they will advise you of hospitals etc. 

    I have the gut stuff too, what dose of omeprazole did you take?  I am on high dose 2 daily.  Plus it does not work for me when I am in a flare either, only thing that gets me better is IV Methyl Pred.  All your symptoms, worries etc, can be advised by these people.  They are not gloom and doom sites.  Also a group on FB too. 

    http://www.vasculitis.org.uk/

    Also on these  you will find the Vasculitis Help Line. 

    One thing also, get that BP checked regularly.  I have really bad BP too and have changed my BP meds many times, fortunately now I have good medication and its working somewhat as long as I am not in a flare.  We are all different, but perhaps if BP bad your GP or Consultant should try different meds.  Losartan made my gut worse, so did a few others, luckily at last I have one that works.

    Good Luck, please let us know how you get on. And do contact the above group they will give you the help you need.  Vasculitis is vary rare and this group was founded by an ex Dentist who has Wegners.  They campaign and also on board of NICE. 

    Best Wishes, remember you are not alone and people here to listen.

     

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    • Posted

      Dear Michelle, thank you for replying . I had never heard of vasculitis until PMR/PRO suggested that it might be this and not PMR.  I feel really scared because  I don't seem to be eable to get  A rheumatology appointment through the NHS. My preferred hospital.. of course that was for PMR...was Chapel Allerton in Leeds, but they have no appointments. Nor have Harrogate.  York and Selby are August and.September. I phoned my surgery a week ago today and the doctor is phoning me on Thursday 16th.  I want to ask if I can go .

      privately

      Before this I had got my BP down to about 140/70 and I had no other problems with Losarten.

      I am on 30mg Lanzoprosole.  I cannot sleep with the pain which seems to be with me all of the time. It is so good to be be able to conract people with the same problems. Thanks

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    • Posted

      You are welcome and it is so scary, but believe me its not when you get in touch with people who know such as Vasculitis UK etc, so many versions of Vasculitis, but not all and doom.  Sorry I dont know about yours, mine is very rare and not many people in this country has/have it, so I am on a support group too that deals with mine. 

      Re the Rheumatologist, I have not seen one yet Ha!Ha! Due to see one in the next few weeks.  You probably need to see someone who deals with Vasculitis too.  I go to Addenbrookes Hospital, Cambridge, but there are others in London and other areas.  Vasculitis UK recommend Dr David Jayne, Consultant a lot of people see him initially, but there are quite a couple of others in London.  Vasculitis UK will help you, especially there helpline and FB Page and Health Unlocked.  You can put all your questions, worries etc and you will get all the support you need.  If they don't know someone is sure to know.  There is also a nurse or there was on the helpline too, she has vasculitis too.  They will help you through and I will if I can.  Main thing is to get the right medications for your illness and some pain relief.  As I say we are all different.  I have Churg Strauss Syndrome EPGA, its rare, I belong to a specific closed group on FB and even us all have different reactions to drugs etc.  But remember you are not alone.  One thing I know pain and the terrible exhaustion seems to run through most of our illnessess and being afraid or stress makes it so much worse, can cause flares etc.  I don't sleep either I am affraid.  One thing I think the insomnia is caused through the steriods, but without them I would die.  Sleep when you can, others who may know your illness may be able to suggest something.  I have had mine over 8 years, but only diagnosed properly 4 years ago.  My allergist diagnosed me and got me the treatment. 

      Main thing is you need a proper Consultant who deals with Vasculitis and some pain relief until you can see a Rheumatologist.  Most of my USA/Canadian and other people all see Rheumatologists, but here I think most see Nephrogologists or Vasculitis/Kidney specialists.  Get on to Vasculitis UK and they will give you a list of hospitals/consultants and perhaps you can get a 2nd opinion or further advice.  Soon as you can see someone the better and can get on the right track.  I do not know if yours is cureable or not, mine is not, but you can go into remission. But its not the end and good things are happening with research al the time now, so hopefully one day a cure will be found for all of us. 

      I am on 40mg x 2 daily of Omzoprazole because I have Vasculitis of the gut and that is one of my flares, it attacks my gut.  I have been on steriods over 9 years now, so on high dose but it does work.  No gut pain unless in a flare. I know the gut pain is awful, really awful.  Mine feels as if I have been shot.  Had lots of things with my illness, operations but the gut one is the worst of all so I understand.  I was on Lanzoprosole for a time, but it stopped working and was put on the other.  You may need to see a gastro consultant too, I highly recommend you see one with Vasculitis knowledge or one recommended by your consultant.  I say this because I have bowel trouble, my local hospital has been useless. My Consultant at Addenbrooke's found one in London and I have seen her and she is marvellous, she knows what tests to have done re the vasculitis but cannot treat the vascultis but will liase with my Consultant. 

      Sorry about the waffle I know what it is like to have these things thrown at you knowing nothing about it, plus its scary and lonely which makes us so much worse.  You can always ask me, but I hope you find one of the groups helpful and get the answers you need.  But know there are lots of things in the pipeline, USA and Canada doing so much research for this awful disease.  I have friends who are ex medical students with my disease and in the USA/Canadian medical system and they go to seminars etc, they give me hope.

      Bless you and I hope you get the Consultants you need, Vasculitis UK helpline will help and tell you what to do, they did me, they tell you your rights on everything. 

       

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