Newly Diagnosed Need Advice Please
Posted , 7 users are following.
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
Spammy
Posted
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
Posted
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
Posted
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
Posted
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
Posted
Klosblue
Posted
MrsO-UK_Surrey
Posted
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
Posted
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
Posted
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
Posted
email me on this site.
Mrs_G
Posted
mrs_k
Posted
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
Posted
mrs_k
Posted
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
Posted
You suggested emailling you on this site. How do I do that? :?
Not very good on the computer.
Spammy