Hi. I have RA and just started 15mg pred for PMR. Am terrified of the thought of GCA. How do you know it's not just a headache?

[Angela123]

I've already been to A and E once due to a headache which I've had for five days now but was checked over and the doctor said I seem OK except for slightly raised BP. Seeing my rheumy on 2nd Jan.

[Whittlesey]

I had a very bad headache before being diagnosed w/GCA. At one point, before the diagnosis, I was in the hospital and they found a high c reactive protein. Temple headaches (very bad, nauseous, dizzy, balance difficult, felt faint and exhausted) and a high c reactive protein are two markers that can lead doctors to test for GCA. One of the better tests is a biopsy of a less used temporal artery. If the biopsy shows enlarged macrophages, breaking the cell walls and possibly the beginning of growth of killer t cells, that is the diagnosis of GCA. They usually start the person on high doses of prednisone, because currently it's one of the best treatments. It stops the inflammation which can cause blindness, with the GCA. With headaches, would have them checked out, even starting with a test for the c reactive protein. At first my sed rate was normal. After the biopsy, it went up to a higher level. The prednisone is slowly lowered until you get to a lower dose. I was changed to methylprednisolone (medrol) because I was reacting to the high doses of prednisone. side of prednisone can be difficult, but currently only treatment to stop blindness caused by GCA. would check some of the markers. Hope you are ok and "only headaches". best, and wishing for good health. Whittlesey NYC U.S.

[Angela123 in reply to Whittlesey]

Hi and thanks for your reply. I haven't felt sick or dizzy so that's a good thing but still have the constant headaches. I did read that the pred can give people headaches - I certainly have the insomnia which doesn't help. I hope the fact that I have CCP positive RA doesn't cloud the results too much - I have a lot of pain in hands and wrists . Bending forwards brings the pressure to the sides of the head. I've been told to return to A and E if vision problems occurring meanwhile will try to relax a bit - Christmas has been taken over by enough worry!

[Nap1 in reply to Whittlesey]

HiWhittlesey. I am a former NYC gal. Now in Floida with G C A. Had pmr which lasted 3 years. Never realized how lucky we are with our medical care until I found this site. I have learned much...sometimes this site offers more than the mds. But we have access without waiting too long. I went to Mayo in August but they couldn't confirm either. My diagnosis by symptoms and sed rate was GCA. Reduced to fast and had to go back to 40. Still there now. Be well.

[PMRpro Ambassador]

Having PMR does increase the likelihood of developing GCA it is true, and may be one of the first signs something is going on. However, GCA can exist all over the place in your body without being found and it is only when it gets to the head it becomes a serious problem in terms of vision. I have something between PMR and GCA and my rheumy here merely put me back up to 15mg when I had some double vision - he is confident that if you have no visual symptoms there is not too much to worry about - and of course the stress of worrying just makes it worse! Which itself can cause a headache.

The other signs besides the "headache from hell" as someone has described it are visual symptoms such as black areas, blurred or double vision and "feeling as if there is a curtain" in front of one eye. You may also get sore temples and it is difficult to feel a pulse in the temporal artery (over your eye, above where glasses sides sit). The vague "fluey" symptoms of PMR are likely to be worse.

Does your headache improve with painkillers? Paracetamol is OK for most people as long as you stick to the recommended dose and don't take it with alcohol. You shouldn't regularly take NSAIDs (ibuprofen and aspirin amongst others) when you are on pred but an odd dose taken in the middle of a meal should also be OK for most people (again, there are always exceptions) though don't use them a lot and don't use all the cold remedies you might be used to taking at this time of year.

If you do develop visual symptoms or a really really bad headache you can always go to an optician - the sort who do all the tests, not just dispensing glasses, and they can look at the back of your eye and see if the optic nerve is being affected. They are probably more use than a GP.

Good luck when you see your rheumy.

[Angela123 in reply to PMRpro]

Many thanks for your help. Painkillers do nothing for me but they gave me a couple of ibuprofen in the hospital so I could try the odd dose with a meal as you say. Still waking up with the headache which moves around from front to back to temples and neck. I'm not sleeping much with the prediction which doesn't help either. Not too long till my appointment. Thanks again. Angela

[DorsetLady PMRGCAuk volunteer]

Hi Angela123,

My GCA didn't give me headaches as you describe, but a very tender scalp which meant it was difficult to comb, wash or do anything to my hair. Think you are probably worrying unnecessarily, but should you get pains in your teeth, jaw or throat then you need to do something about it. If painkillers help your headache then it probably isn't GCA! Take care, and good luck. DorsetLady.

[Angela123 in reply to DorsetLady]

Many thanks DorsetLady. I'm sure I am worrying needlessly but its such a help to hear of other people's experiences - many thanks. My scalp is a bit sore when I blowdry my hair with a brush but then it could just be because I have a normal headache.

[Badgergirl]

I'm scared too. I have had uveitis for 40 years now with constant cycles of steroid eye drops, relief of symptoms (sometimes for many months) and flares, which manifest as redness, pain and blurred vision. I am now partially blind in one eye because of complications. I also suffer from temporomandibular joint disease, which is very painful around the temple and jaw at times. With these symptomatic problems it would be hard for me to know whether I am having a uveitis flare/TMJ or the beginning of GCA. My GP seems unconcerned and has reassured me that while I am taking steroids for PMR I will not get GCA. What happens when the steroids are reduced gradually to a low dose, I wonder? Not so protective then perhaps.

Reading these replies has been very helpful as it seems there are other symptoms to look out for such as the 'veil' going over the eyes and nausea.

[Angela123 in reply to Badgergirl]

Gosh what a nightmare - you've done so well to cope with all of this over the years. I thought rheumatoid arthritis was bad enough but there are so many other related conditions ready to strike and its difficult not to worry. Thanks for your reply and best of luck. Angela

[Whittlesey in reply to Badgergirl]

Hi Badgergirl, I agree with what you say here. The "veil" going over the eye is an extremely serious symptom. I had it. And when they "found" the GCA, I was put on a high steroid dose, 100 mg per day and I had a "flare" within about a month. they were giving me 120 mgs of medrol every six hours. I am down to 5mgs of medrol and 10 mgs of methetextrate per week. But the "veil" is very serious. Previous to that I had a bad headache for about 4 months. They kept diagnosing it as a new type of migraine. I didn't think it was. I had been dealing with migraines since '97 and this was not a migraine. and once the migraine medicine wore off, it would return. I had a high c reactive protein. They should have tested me at once for GCA, but their reasoning was that since all the markers weren't present, they did not want to do a biopsy and that I was too "young" at 59. I could have lost my eyesight due to "not having all the markers". The biopsy is not painful, and can clearly say whether there are giant macrophages and if the cell walls have been burst. If this is present it is extremely serious, because it impedes the blood from flowing to the eye nerve and you will lose your eyesight fairly quickly. I have some vision damage in my left eye. I would advise anyone with recurring headaches and some diagnosis of inflammation from another source, to get the biopsy for GCA. Once the technicians actually "see" the enlarged macrophages on the slide, they can immediately treat for GCA. It can save your eyesight. A rheumatologist specialist I saw immediately after being diagnosed, when he heard of their reluctance to test for GCA wrote a memo to the neurology department at Mount Sinai in NY, to always test for GCA when there is a high c reactive protein, even in the absence of other markers. In the U.S. the youngest person diagnosed with GCA is 50, younger than I am. He also directed them to not use age as a consideration, for this test. This is a rare disease and not all doctors are fully trained in it. This is an extremely serious disease and one should not lose one's eyesight due to a misunderstanding of "markers".

wishing you safety and good health, all my best, Whittlesey

[polkadotcom in reply to Whittlesey]

I have never had raised markers with either PMR or GCA. My blood results stay stubbornly not only in the normal range, but at the lower end of that. However, I had classic symptoms otherwise and diagnosis was not a problem for my then rheumatologist.

It not quite true to say that a biopsy will give a definitive diagnosis for GCA. If the results are100% positive then you are clearly on the right track.. However, a negative result doesn't mean you don't have it - a temporal biopsy would not have been any good for me as I had GCA inflammation in the larger arteries, in some of the cranial arteries but not in the temple artery. There is also the problem whereby the piece of artery sampled simply doesn't have giant cells - they may be there, just not in that sample.

Therefore a positive result is just that, but a negative is a 'maybe'

[Whittlesey in reply to polkadotcom]

You make a very good point, polkadot. A negative biopsy does not always mean you don't have it. My understanding of GCA is that it can also be in the other "large vessels" and some I believe, may have it in the "small vessels". In researching GCA, yes there is a GCA of the cranial arteries. and if you don't have a piece of the artery with the giant cells, it doesn't mean that there are not other arteries with the giant cells. It would seem that the actual physical symptoms of headache, at the temples or in the head -- that do not respond to standard headache or migraine treatment, may well be GCA. And I would think that any other inflammation, such as RA or PMR, present, should encourage the physician to suspect and look for GCA.

I have been tested with an MRA in some of the other large vessels and it is there, in some. They are not sure how long it has been there. My cartoid artery and two vertebral vessels also have the GCA. All three have started to dissect. Can be very dangerous with the cartoid artery.

So passing this off, as an unusual headache, is not good enough, I wouldn't think. This can be a very serious disease and the sooner it is treated, we are much better off.

Thanks and wishing everyone health

all my best,

Whittlesey

[Badgergirl in reply to Whittlesey]

Thanks Whittlesey for the detailed replies. It seems we should push for a biospsy. I haven't had a rheumy appointment yet - still waiting - but will push when I get one.

[Whittlesey]

One way to tell that it might be GCA is if the temporal arteries are raised on one or both sides of the temple. They raise out , they are blue and you can see them. I had this several times before the diagnosis and have had them since. I usually call the doctor and increase the prednisone when I see this. I usually have a headache when they are like this. Also a high c reactive protein is a marker. It seems the age should not be a factor. Some of the medical people on this blog say that you can be as young as 30 to have this. Doctors need to understand this. They can do a biopsy, which is not really difficult for you, which can pretty definitively tell. Although, even that if it is negative doesn't mean you don't have GCA. Hope you feel better. all my best, Whittlesey

[Angela123 in reply to Whittlesey]

Many thanks. I am down to 7.5mgs pred now and being 4 months later I am feeling a little more relaxed and accepting of my PMR. Still slightly worried - you have had a horrible time of it Whittlesey and still are. I hope you get better soon. Angela xx

[Whittlesey in reply to Angela123]

Thanks Angela123. glad you are down lower in the pred. Glad you are more relaxed and dealing with it. When I was first diagnosed I didn't know what I was dealing with. Now that I "know", I am doing as much as I can, reading studies, reaching out to professionals on GCA and relaxing, knowing at this point, not much more can be done. Personally, I think diet and the right herbals may help. But that is a personal opinion and there is not much definitive "in", on that. But I do it as much as I can and hopefully it helps.

Wish you much health and that things continue to go well. I think it's admirable that you have gotten down to 7.5. glad.

Thanks for your concern.

all my best, and health, Whittlesey

[Tweetiepie]

I think I had every indicator going the awful headaches I used to wake myself up groaning tender scalp neck & shoulder pain very prominent veins in the temple area loss of appetite and weight loss I could not put the phone to my ear and even putting my glasses on hurt. I went back to my eye clinic (have macular degeneration for 9 plus years) when I lost the sight in my left eye. The point I am making is when I went back to clinic I had little or no pain I.!!!f asked would have said I was getting better.

[Angela123 in reply to Tweetiepie]

Thanks Tweetiepie. What a worry for you and losing sight in one eye must be devastating. Whittlesey has also mentioned the prominent veins. I am down to 7.5mgs of pred and a bit less worried now. Angela xx

[me69]

I was diagnosed with PMR in Nov 2004 ,and have been on Prednisolone since then, 5 months ago I experienced temple pain (GCA ? ) I now take 25mg Prednisolone and 15mg Methotrexate, I was due for a biopsy but was told that as I had been diagnosed 10 years ago, then the biopsy would not prove anything, I'm not sure what to do or what the future holds.

On another thing , I know that losing your appetite is another sympton, but my mouth is very dry all the time and inside my mouth feels very rough as if the skin is peeling, does anyone experience this ?

[Celtic PMRGCAuk volunteer in reply to me69]

me69, I'm so sorry to hear that after all these years with PMR you have succumbed to GCA but I hope the temple pain responded quickly to the increased dose of Pred. It is generally considered that MTX is not the best treatment for GCA, but it's probably been prescribed more as a steroid-sparing drug in view of the length of time you have been on steroids for PMR. Regarding your mouth problems, I assume you're taking Folic Acid - worth checking with your Dr to ensure you are taking the right amount.

[heli13]

Hi, How did they find the GCA inflammation in the larger arteries? Helen

[polkadotcom]

me69,I got a very dry mouth when on Methotrexate and there are other meds which do the same thing. I was on Folic Acid every day except the day I took the MTX (5mg). If you are not taking this amount it might be worth asking if you can increase it.

heli13, if consultants/rheumies feel that it is justified, they can refer you for PET or CT scans which will show inflammation anywhere in the body. This really should be routine but these scans are very expensive and not often done.

[Nap1]

Blood work. I get headaches from the prednisone every day.