Tingling in left hand side of head and body fine on waking, but starts within 30 min of taking meds. Can last most of the day but always gone by evening .Very muddled head, not a headache but appears to affect my balance,ears and vision .
Off sick 3 months now but being called in by H/R for medical. Have received first of 6 counselling sessions today as I am not sure if I am just having anxiety attacks.
Councillor advised purchasing a book called Natural Recover by Alison Adams and seeing a Homeopathic .Have had a quick look and noticed that it mentions Cortisones will stop any Homeopathic remedies from working. Has anyone any information about this or experiencing similar symptoms could it be Cortisone that are causing symptoms. Emergency visit to GP last week as concerned about symptoms ,not my own GP. Was informed as not concerned I was having a heart attack or Stroke and she was not sure what was going on advised to keep taking meds and saw my GP when due in 2 weeks.
Rose
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Rose54
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I am so sorry about your symptoms Rose. Has your Councillor any medical knowledge about PMR? I know two homeopaths who have had PMR and took steroids. You can use a homeopath to help with the side effects of steroids if you wanted to try it. Homeopath friends of mine have offered to help me with side effects, but I am not sure how much I believe in homeopathy. Pred can cause dizziness and tingling. Also fuzzy head and sometimes blurry vision. With the vision problems you should ensure that you have not got GCA as the chances of getting it are higher if you have PMR. The main symptoms tend to be very bad headache, tender scalp, jaw pain when eating. Cortisone does a fantastic job on PMR and really can sort out the excruciating pain you can get. Carrying on working I found was quite tiring and I had to find techniques to get round the problems of PMR.
I don't want to throw money away on things that don't work I like you don't know if I believe in Homeopathy I also was a bit confused that she was suggesting I try it. I saw GP as I was concerned about GCA I was told I did not have it and as I was on meds it would be treated which I know on 15peds it not right.
I don't have a very bad headache and eating is fine although I do appear to have sinus and ear problems which are probably related I will continue trying steam treatment to relive this. I can cope if I know what is causing symptoms so will discuses with GP next visit. I hope to try a Tia Chi class on Friday and have several meditation tapes I am trying to do daily due to thinking I was suffering from anxiety. I am not sure about returning to work but would like to as we are likely to be made redundant in March and redundancy pay would be handy but my health is more important at present.
All the advice on site is very helpful, I think I am ok for 3 months as half pay till then .I am a firm believer in looking after yourself as no one else will . Unfortunately some days we think we can do more than others but I am soon learning that's not true are minds may tell us we can but our bodies tell us differently .
This is the first time I have actually seen PMR listed as a disability.
No one has ever said this before and "yes" I absolutely agree whole heartedly that it is.
Is this recognized in your country - presuming you are in England?
I have definitely not seen PMR listed as such on our NZ Arthritis Foundation website and took them to task over trivializing and glossing over PMR when in fact I have come to fully appreciate it is a life changing challenging condition in more ways than one.
GCA is recognised as a disability and is covered by disability law in the UK. Whilst PMR is related to GCA and for some of us it is the only manifestation of GCA in the trunk arteries, I have a sneaking suspicion that since the textbooks say that PMR is well managed with low to moderate dose pred they would say it can be medically managed.
A paper came out last summer that makes it quite clear how life-changing PMR can be. But the other perception amongst many doctors is that you have to be over 70 to develop it - and of course by then you are no longer of interest to the people considering loss of income in the workplace. I am of the opinion that for many people PMR is worse than GCA - it certainly stops you doing more unless you have loss of vision due to dilatory diagnosis.
Hmmm... most interesting and thank you for this information.
About time some Doctor's changed their mind set with regards to age of PMR being as broad as the disease itself.
In NZ no statistics are kept according to my Rheumy and as I may have mentioned previously on this forum, he diagnoses two young people per week.
If I remember will ask him to quantify and qualify age group/sex/race etc.
The only way we will have a ground swell of change of perception towards this disease and its close relation GCA, is to be as armed with as much knowledge on research as possible - knowledge is power in my book and its time perceptions included a much broader and more accurate view point.
Someone in the US also said their rheumy was open to the concept of younger patients having PMR.
Ask him very nicely to please publish in some form - even if it is only a letter to a medical journal.
Unless people start to publish their experiences, even if only in anecdotal form, nothing will change. WE know there are younger people with the textbook symptoms - but they aren't being diagnosed simply because of this age perception.
Frankly I am appalled that a counsellor recommended you to use homeopathy. They are not supposed to make such direct interventions as far as I know. And the official line after close examination by an expert who used to work in the field himself but turned watchdog is that it is no better than placebo - I won't comment one way or the other on that. There are a few things I have used homeopathic style remedies for - but homeopathic practitioners have been known to tell PMR patients they can help the side effects but not the cause.
However - have you had ANY relief from the symptoms you had at first? That GP sounds about as much use as a chocolate teapot - locum she may have been but she is supposed to deal with a bit more than a heart attack or stroke and I'd hope such patients would have dialled 999 rather than wait for a GP appointment.
Have you tried taking your dose at another time? Some people find that their side effects of that sort almost disappear if they take the dose at night rather than in the morning or split it into 2 smaller doses. The usual advice is to take it all together in the morning - but for some people the other options simply achieve more relief of all sorts and that is more important.
Has your GP referred you to a specialist rheumatologist? If not, why not? And what sort of vision problems have you got? Have you seen an optician for their opinion - a proper one who can examine the back of your eye having dilated the pupil with drops, not just a dispensing one who just tests eyes to give specs.
I know now that all the symptoms I am experiencing are due to the Meds so feel much better about things .What would you suggest I have been taking 15 in the morning about 7.00am so could you please tell me if going split dose tonight how much to take and what would be best time to take it I usually go to bed at 10.30pm .Have read post about taking them early hours of morning but if I had to set alarm would be too wide awake to go back to sleep.
I will give the Homeopathic medicine a miss
Will carry on with counselling as its through our health are at work program I don't think it will help as the only reason I gave it a try was because I though I was suffering from anxiety. She will phone me next week will be interesting to see what she says as I am not taking her advice re Homeopathic . She suggested this after saying I was placing to much trust in my GP again I was surprised she even said this.
My GP has not offered any referrals for eyes or to a rheumatologist but I will ask him on the next visit.
I did have my eyes tested by my Optician in June and he said they where fine pressure was very good.
I am on Levothyroxine 125mg for underactive Thyroid again monitored by GP
When I asked about being referred to specialist at our local hospital years ago I was told their was no need to.
I am able to do more now since starting the Preds pain free and feeling much better if could get rid of side effects I would say nearly feeling human again.
It helps so much to know so many have had similar experiances
I am a counsellor as well as having PMR and I also want to say that this counsellor went well beyond her role and it is not within her level of competence to suggest any treatments . If she is a member of BACP, which she should be, you would be within your rights to make a complaint to them about her. If you have got this counselling through a work- based (EAP) programme then you can make a complaint to the EAP company. They should be able to offer you an alternative counsellor. A few sessions can be very useful when we are going through all this uncertainty and pain, especially as you have related difficulties at work and some appropriate support can work wonders!
its actually through a well known health company which I wont name which is why I was so surprised
I also do complementary therapies and like you would never suggest treatments other then was asked for .What surprised me even more was the fact she even went as far to suggest a practitioner who lived close to me ,I get the chance to do feedback to them so will see how next session goes and if not happy will take it further .
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Flare confirmed with PET scan
New to PMR and a little ignorant!
Hi Everyone....
GCA Tapering Prednisolone too steeply, the next chapter
