Hi does anybody have pin and needles in their neck,arms, and i have a cold feeling in my right leg, it starts at the bottom, my doctor has done a blood test for gca and it came back clear. i am on 7.5 pred at the moment after coming down from ten, she said i am only border line polymyalgia rheumatica.
Hello Margaret, I can't say that some of the pains I experienced or still experience can be described as pins and needles because I would describe them more as nerve pains. There one minute gone the next! Pre diagnosis I had shooting nerve type pains that went from my neck, shoulder blades to the tops of my arms. That pain has now gone. But I still sometimes experience nerve type pains and they can be anywhere and can last for split seconds.
about 3 weeks ago when shopping in tesco my right ankle and foot went numb, it was the oddest feeling and lasted maybe 1 minute in total. I have not experienced that sensation again. All the best, christina
Hi Christina yes you have hit the nail on the head it does feel like nerves, many thanks, as you say it comes and goes you have put my mind at rest. take care
Margaret
Apart from the fact there isn't a "blood test for GCA" - is the doctor sure it is PMR?
If it were me I would like to be referred to a specialist - this isn't typical of PMR but could be a sign of other vascular problems.
why would a doctor do a blood test for gca if you cannot tell, how do they find out if you have it
There are 2 blood tests that show if there is inflammation in the body, they are not specific to GCA and PMR though, they can be raised in any form of inflammation including bladder and chest infections. About 1 in 5 patients with GCA and/or PMR have perfectly normal blood levels of these tests so they are not 100% reliable.
They do the test as part of their investigation when the patient has symptoms of GCA or PMR, it is just one piece in a jigsaw - and many doctors apparently do not know that they can sometimes be normal even though the patient has the typical symptoms. If there is any suspicion a patient might have GCA the GP should be referring to a specialist rheumatologist, especially where the bloods don't fit the picture.
Hi Eileen, is your advise to see a specialist aimed at Margaret or me? When I saw my rheumatologist for the first time he asked me if I had pains in my jaw when eating, sore head especially at hairline, a headache or effected vision. I said no so no more discussion re GCA has ever risen. I have blood tests every 3 months and they have always come back great, except when I have had a cold sore or a cold or something like that and they have come back raised, in which case the tests have been repeated when the infection has gone and they have then always returned ok. But I do appreciate that blood tests are not always 100% reliable. If I think I am recovering ok how would I know if further investigations should be done in case of suspected gca? As I said I do sometimes suffer from the odd nerve pain here or there and never thought anything of it. Also when I scratch myself sometimes on my face or head and I get a little tingling nervey pain that goes almost immediately when I stop scratching I thought it was due to my skin being more sensitive due to the side effects of the preds?
i'm just a tad worried now!! Regards, christina
No - aimed at Margaret. What she says her GP has said/done is hardly confidence inspiring and the symptoms she is describing are really not common in PMR or GCA.
You were asked that initially and there was no reason to suspect GCA then - you know what to watch out for now and you would go and tell the doctor if any of those symptoms appeared. I was asked about headache and nothing else, no questions about scalp pain or jaw pain - both of which I had had but they had gone. A diagnosis of GCA, like PMR, is a clinical one, made on the basis of symptoms -for various reasons even a negative biopsy doesn't mean the patient 100% doesn't have GCA . That is one of the major problems in both, you can't PROVE it, you can only work on a high level of suspicion. Using pred that reduces the symptoms a lot and fairly fast is another piece of the jigsaw.
The pains you are describing are not what you'd associate with GCA. Patients do usually feel pretty poorly, fluey, have jaw pain, scalp pain or severe new headache - not all necessarily, just like the ESR/CRP may not be raised either, sometimes that happens later. You can have GCA without it affecting the eyes - it doesn't always affect the blood supply to the optic nerve - and in that case the urgency is less though it may make you feel a bit ill and it does need to be treated. I almost certainly have GCA - a degree further than "just" PMR but when I had some double vision the rheumy put my pred up to 15mg/day again - and everything was fine. But the other signswere not there.
Not need to worry - just be aware.
Phew! Thanks Eileen you have put my mind at rest.
Hi Eileen, you suggested some time ago that this particular site or forum may not be for me because I am no longer on prednisone. I have continued to follow these discussions because I am debating with myself as to whether I should go back on prednisone. I find your comments to Christina very helpful and thought provoking.
First off, I was professionally weaned off pred. after a little more than 2 years. I was painfree and my ESR number was low (normal). For these two reasons, although my rhemy came highly recommended, she no longer seemed to take me seriously. It was as if she did not know that blood work could not be entirely relied upon.
When I told her that I had mild pain which mimiced the original muscle pain, she looked at me as if I was crazy. I thought that this might be my body getting used to no longer having pred. in my system. She never picked up on the fact that maybe I needed to go back on pred, even though I am beginning to think that way after reading all the discussions on this website.
I, like Margaret, did experience the "pins and needles" in the thigh area of my right leg quite often after I went off pred. and the only relief I could get was through rubbing it and applying heat. It would sometimes go from pins and needles to numbness and I would massage it to try and improve what I thought to be poor blood flow. I no longer have this feeling in my leg but I do have a weird feeling on the right side of my head like rapid blood flow. Although not constant, I feel it numerous times a day, every day for about 10-15 seconds at a time.
My GP sent me for a CATSCAN on my head and nothing suspicious showed up but I still have this feeling and now have pain periodically which extends into my neck. I am being referred to a neurologist but, the reason I am writing again is because PMR is a vascular issue, I wonder if the blood flow feeling in my head and the numbness in my leg (both on my right side) could be caused by a weakness in the veins.
You are so knowledgeable Eileen, and to be quite honest, I am losing faith in our medical so called specialists that seem to only go by the text books and do not listen to the patients. For example, I asked my GP the other day why my rhemy continued to think that my poly was in remission based solely on the blood work. She replied that it was because there were so few markers upon which one could rely i.e. ESR.
Please do not think that I am a hypocondreact. I am just trying to put all the pieces of the puzzle together in an effort to possibly find answers. I do worry about GCA and wonder if that could be the cause of my problem as I doubt if it would show up in a Cscan. Would GCA only involve the veins in the temples or behind the eyes?
I hope that this does not sound like I am all over the map. I have brought up a couple of issues which may or may not be connected. I just wanted your views on some of these health issues. I am considering going back to the rhemy and ask to be put on pred if I continue to have the mild pain that I felt mimiced my original pain.
Thanks for your help. I would like to know if anyone else has experienced the numbness in the leg or any other issues similar to mine. Thanks!!!
Hello linda, may I just ask how long it is since you took your final dose of prednisolone? Christina
Dear LINDA
i HAVE READ ALL THAT YOU HAVE WRITTEN AND YOU HAVE HELPED ME A LOT, DONT LEAVE THE SITE AS I THINK IT WOULD HELP YOU, AND I AM GLAD SOMEONE ELSE EXPERICIEND WHAT I HAVE SO THANK YOU . BEST WISHES . MARGARET
I absolutely don't think you are a hypochondriac and I think I do understand where you are coming from. The doctors appear not to listen to us and in so dooing miss part of the story - I had a rheumy who wouldn't listen to my report of the dramatic improvement on 15mg pred and rapid return of the symptoms when I stopped taking it. In the story of PMR it is an important point. The work I have done alongside other patients and research rheumies made it very clear how many things about PMR they are not clear about. Most rheumies will tell you PMR doesn't affect feet and hands. A study completed last year has shown it does - with imaging proof.
"She replied that it was because there were so few markers upon which one could rely i.e. ESR." - the problem is that doctors have become totally orientated on the lab values and where there are no reliable ones, just clues, they get stuck. It's called clinical medicine: you look, and listen, and THINK and use the knowledge you have acquired in medical school and on the job and work it out. But the modern ones want figures set in stone. They can't always have them. Or they don't look in the right places.
Is the noise in your head close to your ears? GCA can affect the arteries supplying the ears - and cause tinnitus and other aural problems. Your comment about poor blood flow may also be not so far from the truth - poor blood flow to nerves causes problems - just like when you sit with a leg in a awkward position and it "goes to sleep". Warmth would improve blood flow as would massage probably.
As far as I know you need PET/CT to show up the inflammation of GCA, MRA will show narrowing due to inflammation - and that is what leads to the problems in GCA, the giant cells narrow the lumen of the arteries (GCA affects arteries, not veins). GCA can affect any artery that has an elastic component to the vessel wall - not all do. You can have GCA affecting arteries in the chest such as the aorta and the artery that supplies the arms, the brachial artery. The brachial artery can be visualised using ultrasound and an experienced operator can see thickening of the wall/narrowing of the lumen. But GCA skips areas - so it all depends on the bit you are looking at being affected - that is the problem with the temporal artery biopsy, the bit they look at may be clear. Many doctors appear to be under the illusion that GCA only affects the temporal artery, reflected in their use of the term temporal arteritis - but it isn't the temporal artery that is the real problem, it is when the GCA affects other arteries in the area, reducing the blood flow to the jaw and tongue (the parietal and maxilliary arteries I think) or to the optic nerve (posterior ciliary artery), that you get symptoms. If it affects the temporal artery it is sore and the pulse is difficult to find. But you can have part of this or all of this.
It isn't really known - but I suspect that the underlying autoimmune disorder waxes and wanes, being more or less active. When it is more active you need more pred, when it wanes you may even manage to get off pred altogether if your reduction coincides with the quiescent period. Then it wakes up again - and the symptoms may come back. Some doctors treat it with courses of pred, a few months decreasing the dose, a period without, rinse and repeat. I suppose overall you may use less pred - and that is what they are so desperate to achieve. What they often don't think about is the impairment to our quality of life now - they are too focussed on what MIGHT happen. If I don't take pred now I will be immobile, at risk of osteoporosis, just the same as if I take pred. I will be in pain, at risk of depression and a lot of other things. It is a balancing act - not an easy one either. But there are pluses to taking pred - they tend not to think of them though.
In the final analysis it is a questions of pros and cons - and they will be different for each of us. But I'd say go back to the doctor - however, I'm not sure your current one is the right one. You need one who will listen and who practises patient-centred medicine. It is a buzzword these days - but they aren't very good at understanding what it means.
I hope this makes sense - I can only see a small section of my reply and I'd rather be able to see the entire thing to read and check back! I hope it helps you clarify your thoughts too - I do this all the time as I learn more and more about this whole game!
Hi Christina, I do not remember the exact date but we had planned a cruise for mid October and I do believe that it was the end of September. I was afraid that I might have a backlash from finishing the pred. so I gave it a couple of weeks and I also brought my pred. with me just in case. I am tired and I have always needed a lot of sleep so I make sure that I get it. I do believe that the PM started because I was very run down and stressed out. My husband died of cancer and I had looked after him until the day he died at home (which was his wish). I then moved to the country, etc. etc. etc. I was a classic case for PMR.
Thank you Margaret.
Thank you Eileen for your very thoughtful and detailed response. I so appreciate all the areas you have covered! I am just quickly acknowledging your reply but I want to re-read it again tomorrow when I am fresh and may have some questions afterwards for clarification...if you don't mind. One thing though that I must say is that the feeling in my head is only a feeling...there is no sound, noise or dizziness. Thanks again. I will respond again tomorrow if that is alright!
Hi Eileen i have been reading your comments to Linda and you make more sense than my doctor, they do not listen to us and i have had that many different things going on all at once i think she thinks i imagine them all.
Margaret
Hi Margaret,
I have similar sensations. I was diagnosed with PMR in July 0f 2014 but have been experiencing pain since Feb 2014. I started at high doses of prednisone, but am finally down to 10 mg.
But last November, while still at 12.5 mg, I started experiencing sensations along my right clavicle. I was teaching a class at the time and actually thought someone had poked me in the back. I looked behind me to see who poked me. When no-one was there, I thought "well this must be another PMR-related issue."
It has continued from then until now. A sometimes strong tingly sensation that runs along the edge of my right shoulder blade -- feels as if it's on the surface of the skin.
I didn't even tell me GP about it. I did come here to the forum, and read that many have felt similar sensations in various part of the body.
What a wied condition!
Thank you again Eileen for your comprehensive and reassuring response. I have read it over a couple of times and have some comments as well as questions.
You mention that "Most rheumies will tell you PMR doesn't affect feet and hands. A study completed last year has shown it does - with imaging proof. " Last night, for the very first time, both my thumbs/wrists
became very painful and stiff. By thumbs I mean from the base of my thumbs to top of my wrists (approx. 3 inches). Today, both have improved significantly although one is still a bit stiff and quite sore. There is a pink area where it is the most tender but there is no heat i.e. feeling of inflamation. This is the first time ever that this has happened to me and I found it very frightening because without my hands (like everyone else) I am helpless. Have you or anyone in the group ever had that happen? It was certainly not a case of "power of suggestion" even though some might think it sounds suspicious.
Your comment "you need PET/CT to show up the inflammation of GCA, MRA will show narrowing due to inflammation - and that is what leads to the problems in GCA, the giant cells narrow the lumen of the arteries (GCA affects arteries, not veins)." baffles me a bit. What is a PET/CT? Is that like a regular catscan? When my GP ordered a catscan on my head, she said that they may inject dye into my veins in advance so that they could see more clearly what was going on. I was glad that they might do this because I felt it would possibly answer more questions. However, they did not inject the dye so the scancould only show if there was a mass such as a tumor and did not address the issue of enlarged veins or arteries. When told that the scan came back without any findings, I said "great, but that does not tell us what is causing this feeling in my head". She (my GP) then said that she would refer me to a neurologist. I have not heard from the neuro.'s office yet but hope to soon. Is an MRA the same thing as an MRI? Maybe it is just a difference in terminology between countries.
I have had suspicions all along that I might have GCA. Could this be the cause of the feelings in my head do you think?
As many of you know, specialists do not have time to explain things and heaven forbid should you question them or, what they might see as "challenge their knowledge". As you say Eileen, if they would only listen to patients as opposed to continually going to seminars where no one has experienced the condition first hand, they just might learn something from shared information.
You say " GCA can affect any artery that has an elastic component to the vessel wall - not all do. You can have GCA affecting arteries in the chest such as the aorta and the artery that supplies the arms, the brachial artery. The brachial artery can be visualised using ultrasound and an experienced operator can see thickening of the wall/narrowing of the lumen." Could an ultrasound determine thickening of the wall in other areas of the body. This bizzare feeling that I have in my head seems to now move downward around or close to my ear and sometimes feels like it might somehow be connected to a vein or artery in my neck. I am wondering if GCA can affect veins or arteries in the neck?
I know that I must sound dense but my medical background knowledge is limited although I am trying to learn as much as I can about PMR and GCA. I now wish that I had stayed on pred. longer than I did.
When I went to the rhuemy the last time, she told me that she no longer had to follow me because my blood work was fine. However, when I told her that the symptoms I was feeling were similar (but not nearly as severe) to the original pain (now just soreness) and stiffness, she never said that I should possibly think of going back on pred. for awhile. She just kept saying that the bloodwork was good so....and, if I should need to, she gave me another requisition for bloodwork. I thought why bother? The ESR levels will probably be within the same range. This rheumy came highly recommended by my doctor and her colleague so I hestitate to change. Apparently, there are not a lot of trusted rheumatologists in my city so they insisted that I wait until I could be seen by her.
My last and final question is: can a person have GCA in other parts of their body without having it in the temperal area? I believe that that was what you were saying but I just wanted to clarify. I am quite fearful of what might happen if say a vein or artery became so enlarged and not detected that it could burst like an aneurysm. I was told by someone in the medical field that aneurysms are familial and my 9 year old niece died of a brain aneurysm many years ago. I am not looking for trouble but this truly concerns me.
Thanks Eileen and others for your patience, understanding and support.
H linda, yes I had pain in both my thumbs and on the outside wrist Bone of my left wrist. Funnily enough I experienced the pain in my thumbs almost 1 year earlier but it sport of went away so did not seek medical intervention. When I took preds the pain went away. Christina
your question to Eileen re GCA in other parts of the body is an interesting one because how would you know it was GCA as opposed to PMR if it was around the same area as the PMR and also GCA in other parts of the body, is the treatment plan for that similar to PMR treatment plans? Regards, christina