Hi,I was diagnosed with oestio arthritis of the neck many years ago and it has worsened over the years causeing other problems like nerve damage and weakness in left arm. However over the period of the last 6 months I have unable to sleep with neck shoulder and hip pain which is made worse when i lie down. Some days i cant get up the stairs due to pain in the hips or down because of pain in knees, i feel worn out and the headaches are horrendous,the final straw came when singing in choir my jaw became so painful i could hardly move it. My doctor just kept saying its the athritis and just give painkillers,sleeping tablets. I told him i wasn't happy as this is different to what i normally suffer so he took a blood test and said c-reactive protein is high and something else and suggested it might be polymyalgia and referred me to a rheumetologist, i feel so depressed andvwhile i dont want there to be anything else wrong with me,in a way i'll be glad if they can put a name to it and i can just get the correct medication. Haveany of you had these kind of problems
Hello Serj
So sorry to hear you are suffering so at present.
To answer your query, yes I (and I'm sure most other people sharing their experiences here) suffer from the same symptoms you are describing.
Like you, on a bad day my hips hurt when climbing the stairs and my knees when coming down. Together with your shoulder pain, these are classic symptoms of Polymyalgia. As regards your headaches and jaw pain, these are symptoms of Giant Cell Arteritis, which is linked to Polymyalgia.
Also you mention your C-reactive Protein is high (the other blood test you had was probably an ESR - Erithrocyte Sedimentation Rate). If either or both of these two tests are raised, then that is generally confirmation to the GP of PMR.
Steroids are the usual treatment and I do hope you get referral quickly because once the treatment is started you will feel so much better within a few days.
Without wishing to sound alarmist, if Giant Cell Arteritis is the reason for the bad headaches and jaw pain, then urgent treatment is essential to protect your eyesight. Push for immediate referral!
Good luck.
MrsO
Thanks for your reply,it was very much appreciated as I have been feeling very low and alone with this illness and although my GP put urgent on the refferal letter then I have no idea how long the list is, but I hope it wont take too long. My GP didn't give me any medication to help this condition because he said it would have to be diagnosed by a specialist first, so in the meantime i am not taking anything to bring the blood tests back to normal which seems a bit strange to,is that right because i could feeling like this all the time i'm just waiting which is making me feel depressed.
Thanks for your reply its lovely to hear from someone who understands how i'm feeling
Serj - of course I and everyone else visiting this site will know and sypathise with exactly how you are feeling and, like you, we have all found great comfort from sharing our problems with other people who understand.
It isn't surprising that you are feeling depressed in view of the pain and resultant lack of sleep but hang in there because once on the correct medication you will soon feel so much better.
I'm surprised if your GP suspects PMR that he has not already started you on a dose of steroids - most GPs do so whilst awaiting the rheumatology appointment - it is these steroids that would normalise the blood tests and they can be quickly stopped without suffering any ill effects after only a very short time if the diagnosis turns out not to be PMR.
How are the headaches and the jaw pain? Have you got any eye symptoms? As I said before, if these latter symptoms are GCA-related, then it is crucial that steroids are started without delay to prevent you from losing your eyesight. If you answer yes to these questions, then contact your GP IMMEDIATELY and tell him what you have been told. Better to be sure than sorry where your eyesight is concerned. Similar advice has been given to sufferers on this site before and as a result one or two people have taken themselves straight to A&E and been given immediate treatment.
Do let us know how you get on.
On a more cheerful note, I see that you are in Glamorgan - my relatives are in South Glamorgan, myself being born in Ebbw Vale, so say hello to Wales for me!
MrsO
Thanks. Well my headaches are still the same and the jaw pain is only when i try to sing or open mouth too wide ,so i try to avoid doing either to much. As regards to my eyes ,a few weeks ago i had trouble only with left eye where it was very dry and ichy but i hada feeling that it was turning so i went to an optician to check it out,as i was too embarrassed to go back to the doctor with something else again. Anyway the optician after a very good emamination said everything was ok and no problems thank goodness.
I will however try to get a doctors appointment and see if he can give me something before i see the specialist to bring some relief. One can only live in hope,but after your advice i think that i will be more insistant on him giving me something,so many thanks
At last,i finally got a date to a see consultant in August! I went back to see GPas many had suggested but he wouldn't give me anything until a consultant had confirmed the exact diagnosis,so it has been an endless wait. Nothing has changed,i still got the horrendous neck, shoulder and hip pain as well as headaches and jaw pain when i talk too much. I have been reading up a little about pmr and it is often said that with the right treatment it can be sorted out very quickly and effectively and within days the pian will improve but from what i've read on here,even with the right medication most people still seem to suffer with good and bad days, so if i was given the correct medication how quickly do you think it would take to notice any difference. Thanks
Serj - oh dear, I am amazed that particularly with your symptoms of jaw and head pain your GP has neither given you immediate referral to a rheumatologist nor prescribed steroids in the interim. You say you have read up on PMR.......have you read up on GCA - a much more serious condition in that if it is GCA as well as PMR you are suffering from, then as I said previously you could be at serious risk of losing your eyesight. From both my own experiences and that of others suffering from GCA and contributing to this site, fast diagnosis has saved their sight. Once diagnosed, I was prescribed 40mgs of Prednisolone and referred within a few days to a rheumatologist for confirmation.
In answer to your query, if diagnosed with PMR/GCA and prescribed steroids, you will be amazed at how quickly you will have relief from your headache, jaw pain, hip pain, in my case within hours and in others within 3 days.
Yes, we do all suffer good days and bad days once on the treatment but nothing like the pain pre-diagnosis and treatment.
I really feel concerned for you and do so hope that your appointment is at least at the beginning of August if you don't find yourself in A&E before then. I wish you all the very best.
MrsO
Serj, MrsO is giving you strong advice. I have PMR and in March I was suffering jaw pain with pain in my eye socket too for a week. I went to the doctors who sent me straight to A & E. There they put me on 60mg Prednisilone immediatley and did tests. I was in for a week and was diagnosed with GCA. Only for my GP being on the ball I could have lost my sight. Please go back to your GP.
Good luck
Hi Serj
I felt much better after a few days of taking Prednisalone. You may go back a little from time to time but it is never as bad as it was before starting the treatment. I could not touch my nose. My doctor put me straight on to the treatment BEFORE seeing the consultant just after a blood test. Also make sure you get some calcium tablets for your bones as the preds. make your bones brittle.
So do go back to your doctor and get those tablets.
At the moment I am feeling very good but I do know that tomorrow maybe not so good. But you just have to stick in there.
Good luck
Spammy :D
Finally seen a specialist today and he was brilliant. When my GP sent a refferal letter he also attached a copy of the blood results but unfortunately they weren't there.The doctor was very thorough and also had another specialist to come in and check everything and even though it meant undressing and going through everything again at least i felt that he was listening and actually believed what i was saying (normally thet look as if i am making it all up). Anyway they think it is polymyalgia, but were more concerned about my head and jaw pain which might be temporal arteritis so i have had to have blood taken today. He has given me prednisolone tablets today but i have got to wait for the blood results to go back to him then he will phone and let me know the doseage to take and if nessessary if i needto go and have a biopsy next week. So i hope to hear very soon,even with the bank holiday
Cant believe it , results are backalready, just had a phone call from the specialist i saw this morning and he wantsme to start on the tablets straight away and go for the biopsey of blood vessel in two weeks time. i asked what the blood results showed and he said there is some inflammation there but he didn't say what. I have now got to take 8 5mg tablets a day,so i just hope i get some relief
Serj
I'm so pleased that you have finally seen a rheumatologist and that as a result things are moving fast towards a definite diagnosis for you, and as you have now been prescribed Prednisolone you should very soon have relief from your suffering - in my case the relief was almost immediate as within a few hours of taking the first dose I was able to eat my first meal in nearly a month (one of my symptoms was nausea and vomiting).
As he has prescribed 8x5mg tablets (40mgs) he must strongly suspect temporal arteritis (GCA), and this is the same dose that I was started on for both PMR and GCA. I'm sure he will have told you to take all the tablets in one go with or immediately following your breakfast, and will also have prescribed stomach protection tablets. If he hasn't given you the latter, I have found from my experience that a live yoghurt with breakfast helps to protect the stomach from the steroids.
Do hope tomorrow sees the start of many better days for you Serj as you have been suffering long enough. Keep in touch as there will be many people visiting this forum who know only too well what you are going through and will be able to share their valuable experiences with you and it does so help to know that you are not alone.
MrsO
Thank Mrs O for your kind words as they are very much appreciated,I must admit i feel a great sense of relief to know something is being done at last and to finally see someone who believes what your saying. He said I wll definately have this biopsy within the next 2 weeks. What is that like and now that I have started this medication will that defenately mean that my eyesight is now protected. I am acheing from head to toe this evening ,nore than normal probably as a result of all the pulling about I've had today but nevermind as long as theres light at the end of the tunnel. I am unable to take anything for indigestion as I am on gabapentin so your suggestion about the yogurt is well worth a try.Thanks
Guest
I have been following this thread with interest, but as you were getting such good advice saw no need to add to it.
However, I would now suggest that you visit www.pmr-gca-northeast.org.uk.
Look at Resources and look at the guidelines issued by the British Society of Rheumatologists (BSR) issued in June this year.
Also look under What is PMR and GCA.
Knowledge is Power.
But keep on coming back to this site - there is always help and assistance here. Someone on this site, has been there, seen it, done it and if anything else new crops up - keeps us all informed.
mrs K
Thanks for that Mrs K it was very helpful, the only thing that bothers me really is the weight gain as i have already gained loads of weight from the gapapentin does it mean the tablets just make you gain weight or the over indulgence beause they make you feel hungry? Just sent my husband shopping for plenty of fruit and clear instruction not to bring any chocolates or cakes. Also cant find much about what it feels like to have this biopsy,can anyone help?
Hi Guest
The weight gain is a side effect, but the good news is that it does not affect everybody. Maybe because you have already put on weight due to other medication - you won't put on anymore. I did not feel hungry so did not 'overindulge' in fact I probably ate less and still do - but the weight still came - grrrrrrrrrrrr.
Biopsy - as I did not have one - I have no personal experience but Ragnar who posts as RDSwede did answer this quey a while back - here is what he had to say in a previous posting
Hi Lyn,
In June 2005, I had a biopsy and there was nothing to it. The scar is just where the hair starts, so it cannot be seen and it was very small anyway. I didn´t feel anything and it was over quickly and nothing afterwards. I just had to get the stitches taken away after a week or so. I had flown over to a 50th class reunion in Glencoe, MN a day after the biopsy (I had been an exchange3 student there). My wife helped me to cover the white band aid in my temple with skin coloured surgical tape so I wouldn´t have big white spot in my face - especially not in the class picture. Nothing could be seen on the picture! A week later my wife took the stitches with the scissors from a Swiss army knife and she had dipped in in gin from a miniature bottle that we got on the Atlantic flight to sterilize it. She was afraid she would cut me but it all went well. I have told this before, but I think there is a \"new generation\" with persons that have got pmr so I repeat this story.
They didn´t tell me that they were really looking for GCA (which I had), so I didn´t know that until 1 ½ year later from my GP. However, I had to styart with 20 mg Pred which seems to be alow dose if you have GCA. After 3 ½ years I was free from Pred in December 2008 and I have no side effects except that I went back to my original weight - I had lost 10-15 lbs before diagnosis and start with Pred.
As you understand, there was no problem with the biposy and no pain or anything else. Good luck
Ragnar
So hope this helps.
Hello again Serj
I didn't experience a biopsy as although I suffer from PMR and GCA, my rheumatologist was sufficiently convinced that my symptoms were being caused by GCA. However, the wonderful MrsK with her mine of information has been able to step in by quoting Ragnar's (in Sweden) experience of his biopsy which you must have found most reassuring.
With regard to your query as to whether your eyesight is now protected by the steroids, yes this should certainly be the case as long as the ESR and CRP blood tests remain normal.
Do hope the yoghurt is doing its job and you are not suffering any digestion problems from the steroids.
Hopefully, you have now recovered from the aches and pains of being pulled about at the hospital, and all good wishes for the biopsy this week.
MrsO
Hi Mrs O. I feel better already and shoulders feel much better. Hips are still painful, but my ribs are very painful for some reason. The information about the biopsy was helpful so I'm not worried about that now and well if I put on weight so be it, it beats being in all that pain and misery. I still cant sleep but hopefully the more the pain decreases that I will be able to relax. Serj
Cant believe how quickly this is all happenning,I have just had phone message to contact the hospital as it is very urgent. When i rang they said that I have go in tomorrow morning at 7.30 for the biopsy. Although i am relieved that things are finally going to improve, its a bit overwhelming that its happening so fast after all the time i've been waiting to see a specialist.
Dont know any more than that yet, only that i will be allowed home later in the afternoon,so fingers crossed. Serj
Hi Serj
Just a quick reply to say good luck for tomorrow - I'm sure after reading Ragnar's experience you will be fine. At least, it's great to read from your previous entry that the steroids are already doing their job and have relieved most of your pain. I know it's terrible not being able to sleep when the early large doses make us so hyper, but rest assured that as you come down on the dose your sleep should improve. Meanwhile rest as much as you can at this early stage, with a daily walk if you can manage it. Will be thinking of you in the morning and look forward to hearing from you when it is all over. Best wishes,
MrsO