1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Newly Diagnosed Need Advice Please

Posted , 7 users are following.

Klosblue
Klosblue

Having been ill since last May I finally saw the Rheumatologist on 4th Dec. He said he felt I had an unusual (non text book) from of PMR in as much as it affected my shoulder/arms as normal but instead of my thighs I have terrrible pain in my lower legs. He did some further blood tests and gave me a Steroid injection. Within days the relief from the pain was amazing! I still felt tired and my leg muscles were still very weak but I could live with that. I have very bad flushes all the time and also night sweats but GP said we will look at that soon! Due to Christmas/New Year, I had to wait until 7th Jan for the Rheumatologist's report and test results to reach my GP but on that day I was started on 15mg a day Prednisolone. I was elated to finally have a diagnosis and was looking forward to getting my life back and trying to get back to work starting with rehab hours.

However! On 1st Jan, I contracted Flu and was still recovering from this when I started the Prenisolone. Within less than a week, I am feeling awful. Terrible taste in my mouth, slight facial swelling, sore throat, very dry mouth, difficulty focusing my eyes, shaky arms and legs and terrible pain in the middle of my shoulders and down both arms. Also diarrhoea once a day usually in the morning a couple of hours after taking the steroids. I have been to the GP twice and have seen two different doctors and they both say they don't think it's the Steroids which are causing the problem but that they think I have a virus and just to keep an eye on it for the next few days. Last night I hardly slept. The sweating was much worse than normal and I was still clock watching at 4.30am. This morning I am still feeling rotten.

I really don't know where to turn now and wondered if anyone else has had any problems like these? I did read in the leaflet with the steroids that you shouldn't start taking them when you have a cold or infection but would have thought my GP would have thought of this.

I am losing faith in my GP as I initially went to him with severe nosebleeds and nothing else, was put on statins and beta blockers with suspected Angina, woke up a day later in agony with all the PMR symptoms which were put down to a reaction to the statins. I was taken off the statins and nothing changed. The beta blockers were then blamed and were chopped and changed to no effect. I was then given an Angiogram which proved I didn't have Angina and was taken off all meds. Again nothing changed. Eventually I was referred to the Rheumatologist and diagnosed with PMR. I have been unable to work or even go to the supermarket since last May, until I had the steroid injection which gave me some life back. I am at my wits end having expected to continue feeling better but now this.

I am really sorry for the length of this post but just don't know what to do and am desperate. Thank you for reading this.

0 likes, 28 replies

28 Replies

Next
  • Spammy
    Spammy

    Posted

    Hi Klosblue

    I am sorry to have to tell you this but I am feeling just like you after 19 months on these steroids. I get the shakes and my legs feel like jelly, I can't seem to control them and I put it down to my reducing the tablets, like withdrawal symtoms. I was not too bad during the summer I could put up with the bad days but now I am getting worst, I wonder if anyone else feels like I do.

    I understand that each time you drop 1 mg you have to expect more pain and that it gets better but mine never does.

    I hope you Klosblue, do not have too much trouble, I understand some people get over it very quickly.

    All the best

    Spammy

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello Klosblue and so sorry to hear of the bad time you are having. I'm wondering if I can help you with one thing......the diarrhoea. When you commenced on the steroids, were you given a stomach protection tablet to take alongside, such as Omnaprazole or Lanaprozole? Lanaprazole upset my bowel and was replaced with Omnaprazole....this caused a pain in my side. Mentioned this at my first appointment with the Rheumatologist and he told me not to take it. Instead I have taken a fat-free live organic yoghurt immediately before the steroids to protect my stomach.

    Did you have ESR and CRP blood tests showing raised inflammatory markers before the diagnosis of PMR and prior to commencing on the steroids?

    As for the night sweats, they can be a symptom of PMR and the flushes can be caused by the steroids. Equally, the sweats are possibly being caused by the remains of the flu. I experienced both but happily these symptoms reduce as you reduce the steroids.

    As for the problem with your eyes, this could be the steroids, but it is vital that you get that checked out immediately to rule out GCA which is linked to PMR. If diagnosed then that has to be treated with high dose steroids to protect your eyesight.

    Some people are highly allergic to the steroids and I've heard that in this case they are sometimes given their doses intravenously. Certainly, you said you had great relief from the steroid injection which is promising.

    I feel it would be wise for you to ask your GP to refer you back to the rheumatologist. I was palmed off by three GPs in my Practice at the height of my illness and pre-diagnosis, since when I have stuck firmly just with my rheumatologist.

    Do act quickly to relieve yourself of this pain and let us know how you get on. Best wishes.

    MrsO

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hi Spammy

    It's possible that you may need to go back up to a higher dose to control the symptoms. Are you having the ESR and CRP blood tests to ensure that the inflammatory markers are normal before reducing?

    MrsO

  • Klosblue
    Klosblue

    Posted

    Thank you Spammy and Mrs O for your replies.

    Yes I've been taking Omneprazole for a while now for acid reflux and haven't had any problems with it. The blood tests did show the raised inflammatory markers on 4th December when I was given the steroid injection and I was started on the pills on 7th Jan. The flushes and night sweats started back in May when all the other symptoms started. The Rheumatologist suggested these were possibly down to my age and not the PMR but this has still to be checked out. I did think I had been through the 'age thing' already though. I forgot to say my age is 51.

    I will take your advice Mrs O and try to get back to the Rheumatologist asap. As I said, I had no problem at all with the injection but am convinced something is far from right now I'm taking the pills.

  • RBLO
    RBLO

    Posted

    Was your steroid injection stronger than the dose you are now taking ? I was interested in your night sweats because my PMR appears to have started (undiagnosed ) in the Spring, but as it got worse my night sweats went away, Now They are back with a vengeance, I am 61 .
  • Klosblue
    Klosblue

    Posted

    Hi RBLO, I'm sorry I don't know the strength of the injection.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hi Klosblue

    Perhaps you could try the yoghurt anyway and see if it helps with the diarrhoea - it's brilliant at lining the stomach.

    At 51, the sweats could be age-related but there is a hormone test available which would confirm this.

    MrsO

  • Spammy
    Spammy

    Posted

    Hi Mrs O

    I keep going back to a higher dose of Pred and then down again but I never seem to feel any better. At Christmas I went back to 15mg ( doctor suggestion)and have worked my way down to 7mg but am still haveing terrible trouble with my legs, in the mornings I cannot walk and have to almost cruel to the bathroom.

    I have a prolapsed disc in my spine and I am waiting for an injection in my back but I feel the trouble is in my muscles. The muscles from my knees up into my waist is the worst. I have over the years pull these muscles through falls.

    I have an appointment with the specialist on 8th Feb. re my PMR, It cannot come soon enough. I don't think the doctors can know what we are going though regarding the PMR unless they have been there. Like the general public and friends that say \"your looking well\"

    I have had my moan, so best wishes to all fellow suffers.

    Spammy

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello again Spammy - Getting down to 7 since increasing to 15 at Christmas is a very fast reduction even though you've been at that dose previously. When increasing back up to 10, I had to do 2 weeks on 10, 2 weeks on 7.5 and 2 weeks on alternate days of 7.5 and 5. I also had ESR and CRP blood tests to ensure that the inflammatory markers had returned to normal whilst on 10 before reducing.

    From my experience, any spinal condition does confuse the PMR symptoms.

    Let's hope the consultant can get you on a more successful reduction programme together with blood tests when you see him next month.

    Best wishes.

    MrsO

  • mrs_k
    mrs_k

    Posted

    Spammy

    email me on this site.

  • Mrs_G
    Mrs_G

    Posted

    Hello Spammy I like you have had to increase my steroids 4mg before Xmas increased to 5mg for the Xmas period as we were going abroad was Ok then not 100% more like 80% With all the freezing weather when we got back and trying to get to feed and water my horses I deteriorated rapidly tried 6mg then 7.5 and have been on 10mg since last Tuesday Mornings are bad some days worse than others Definately have knees that dont want to bend and wrists that seem useless in the mornings but by the afternoon I feel OK I was loath to increase them further as I am having a blood test tomorrow and DR ( thank goodness !!) Wednesday I can see 15mg looming so I will post after my visit Wenesday to see what she says about increasing then reducing Your reductions do seem very fast When I had this illness before I had no relapses whatsoever so this time mentally it has been more stressful as you do feel you are getting nowhere It looks as though this time I will be doing a Marathon not a sprint !!! Read the paper on PMR on the PMR North East website again Tried to print it out but it didnt work Anyone know if you can get a copy ??
  • mrs_k
    mrs_k

    Posted

    Mrs G

    Yes you can get a copy providing you tell us which one you want specifically.

    Follow the contact link on the site and can you tell us why it won't download and also if you have broadband.

    We can download and email it or post it. Email preferably.

    mrs K

  • Mrs_G
    Mrs_G

    Posted

    Hi there it was thwe one that is 28 pages long I downloaded it fine and thought it would be easier to read it at leisure but for some reason it wouldnt print for me My printer probably thought 28 pages sounded like hard work !! I will go on there tomorrow and join the association and take it from there Thanks for your help Mrs G
  • mrs_k
    mrs_k

    Posted

    Klosblue

    I just noticed your location.Under Care and Support on this site is listed

    Tayside Support Group. This Group supports patients throughout Scotland.

    Tel: 01382 778 596

    Web: www.pmr-gca.org.uk

    Thought it might be useful for you to know.

  • Spammy
    Spammy

    Posted

    Hi Mrs K

    You suggested emailling you on this site. How do I do that? :?

    Not very good on the computer.

    Spammy

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.