Just over 5 years ago I started experiencing difficulty in standing and walking.Tolerated it for some time before going to the GP as knew he would say I needed to lose weight and my back pain was wear and tear. Always being an outgoing person and laid back ,I found my personality was changing due to the discomfort I felt.I seemed to get one cold after another and not able to shake them off completely.Eventually went to my GP whom I had been with 20yrs. He said exactly what I knew he would. As my condition got worse.I took the advantage when he was on holiday to see another Doctor locum who said it sounded like PMR. Never heard of it before. He was not sure I fitted into the age group for it .I was then 59 yrs. old.A month later after yet another flu-like cold I developed Severre headache in the left side of my head and over my eye ,I saw another doctor who prescribed me antibiotics as he thought I had sinus . I might add I am not prone to headaches. 3 days later it was so bad I saw the same doctor and he sent me for a Blood test. 4 hrs. later another GP was knocking on my door with a Prescription of Prednisolone and told me to take 40mgs. straight away and said I had Temporal Arteritus. To keep on 40mgs. and go and see my GP in 3 days. This I did and he refereed me to a Rheumatologist. Meanwhile I had to reduce the Steroids gradually as the pain in my head went almost on taking the 1st. dose.Over 2 months later I saw the Rheumatologist. He said it was doubtful I had PMR.as did not seem to fit the criteria.After several more tests and visits to him he found I had too much Calcium in my blood stream and diagnosed Hyperparathyroidism.Then passed me on to a General surgeon to have the offending gland removed.Also adding all my symptons would disappear after having the op. I then had to lose weight before they would operate and reduce my Steroids to do this. The Rheumatologist said he did not want to see me again.I did as I was told lost over a stone and reduced Steroids down to 3 mgs. Then my headache started again.So back up to 28mgs. this time advised by my new GP. As my other one had semi-retired.This happened about 4 weeks before I was due to have my op.The surgeon said he would operate by Local anaescetic as had put some more weight back on.The first op. was not sucessful so he made an appointment for me to have it done again under a General a... 9 months later. This time it was successful. I waited and waited for the miracle to happen of feeling OK again ,but it did not happen.After up and down on the Steroids advised by my GP for all the other things which were happening to me he referred me back to the Rheumatologist ,this time a different one. He too said some things did not add up.After all kinds of tests And no positive name to my problems.(Although he did pencil in PMR. on my notes )Also bearing in mind my SED was raised all the way through although still on Steroids. He just dismissed me saying my GP needed to help me lose weight and try and get off the Steroids,and take painkillers for the pain. These I have avoided all my life as they do not agree with me. I have been down to 5 mgs. Predisolone since December but things are getting worse I cannot hardly use my hands now ,have constant pain in my legs and other parts I never had before. Recently diagnosed with having Diabetas 2.Have to use a wheelchair when I go out . My GP. says I have got PMR.I have avoided even going back to him as he will up my Steroids and I do not want this.I have so many symptons which others have in their postings. I have now joined a Support Group and signed the petition.At least I feel more positive after reading of others plight. I am now 65yrs. and my plans for my retirement seem to be a figment of my imagination. I do hope more can be investigated into this cruel condtion. I live in hope.
Holly
I am so sorry for what you have been through and do hope that by joining the support group, which I think will be the East Anglia Group, that you will now find some hope for the future.
However, there is one word of caution, with Temporal Arteritis also known as Giant Cell Arteritis, there is a danger that if the steroid dose is not keeping this under control you can lose either partial or all of your vision and once lost, it is irreversible.
If at anytime the symptoms come back, severe headache, pain in left eye, ache in jaw and difficulty in chewing - up the steroids and if not able to get to your GP go immediately to the nearest A&E and tell them what is happening. Do not let anyone fob you off.
We desperately need diagnostic procedures for these two illnessness and to this end, the group you have joined, are working to form a National Organisation for PMR-GCA to highlight PMR-GCA and also press for research and set up support groups throughout the UK.
And quite a number of patients have written to NICE asking for them to be cleared and issued as soon as possible. This is probably the reason why it was difficult for you to get diagnosed in the first instance. Most GPs have about 10,000 patients in their practice, like my GP and they only have 3 PMR and 1 GCA patient on their books. I was one of the lucky ones whose GP had come across both illnesses in the past. I have GCA.
I was interested that you said you had signed some petition. Would you be so kind as to tell us what petition so we may join in as well.
Sorry Mrs. K I think I used the wrong wording when I said I signed a petition .What I really should have said was that I filled in the Survey at Pmr.fighters. Please blame my confused state of mind. Thankyou for your reply.I wish I had found this site years ago as I would not have felt so alone. As until now that is how I have felt. Thanks to everyone on this sight with talking about symptons etc. who have made me think more positive. As I have a good relationship with my GP. I am going to print off from other websites ie: Support groups ,the information that they have gathered from other PMR/GCA sufferers symptons and give it to him so he can see what it does involve. He is on holiday at the moment so as soon as he is back I will be down there. Thankyou once again.
e:mail pmrfighters@yahoo.co.uk or via this site -- I am one of the pmrfighters
Mark if for the attn of mrs K. Remember to sign it Holly.
I can then email you a 28 page document written by Professor Dasgupta on PMR and GCA and also a couple of diagnostic charts.
So glad you filled in the International Survey - over 127 sufferers have filled it in within two weeks of launch - we are hoping for lots more.
By the way, we all have fuzzy days and, yes, this site is how pmrfighers started. Its a long story with no end in sight yet.