I haven't written in a while. My journey is so convoluted that I have to keep a note pad to be able to keep up myselt. Since I last wrote, I went to Mayo Clinic here in Florida. There was no real diagnosis. Simply put, my blood test shows pretty definite GPA (granulomatosis with polyangitis). I have had to anca tests and 2 proteinse 3 tests and they show I have the antibodies. My symptoms on the other hand are for GCA. "Presumed GCA" was Mayo's diagnosis. They suggested methotrexate to start with because of the gpa ...and maybe but not likely the gca. I did that and lasted about 3 weeks on the methotrexate....not nice! My rheumy then decided he is going to treat me for the gca and prescribed Actemra. It has taken over a month to get that arranged. I'll have my first infusion day after tomorrow.
In the meantime, my pred dose keeps going up because nothing seems to get rid of this awful headache. Right now I'm at 60!! My rheumy decided I should go to Mayo's emergency room last Monday. He wanted me to go somewhere where there would be a rheumy on call and here in Orlando, no rheumy's on call at hospitals. (who knew!) We dropped everything and drove over 2 hours. And all they did was make sure I wasn't having a stroke, cat scan was normal. They did an ESR and that was ok. AND NO RHEUMY ON CALL. 8 hours in the ER and a night in a hotel then home. Next day my rheumy says they "dropped the ball" because rheumy had been arranged beforehand.
In the meantime, I still have this raging headache and my rheumy is on the phone talking about taking another trip to Mayo!!! That was 4 days ago. I finally said not possible. He was getting ready to go on vacation and I think wanted to put me out of his head. The doctor in the ER at Mayo suggested a CTA of the neck and brain. So the last conversation I had with my rheumy before his vacation was to go to a neurologist so he can order the CTA . That was done and I'm having the CTA in 4 days. I'm not sure what that will show if anything.
Now to get to my main question. I still have this horrible headache!! One side of my head feels like somebody took a big book and just slammed it against the side of my head. I take my 60 pred in the morning and after a few hours, the pain subsides and I can function a bit. But upon waking at 5 or 6 am, its a nightmare!! I can't seem to find any kind of relief until the pred kicks in so thats not until mid to late morning. Does anyone here know what I can do for those few hours?? I have no words to explain how painful it is. I've tried tylenol, the dr at mayo er prescribed a low dose of gabapentin for a few days, thats not doing anything......I put a cold pack on the side of my head.....nothing helps. Can't lay down, can't stand up.....sitting on the couch whimpering seems to be my plan of action. Thankfully, time marches on ...the pred kicks in and there is some relief and I can come on here and ask all you nice people what to do about this damn horrible headache?????
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pattypoo01
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If it's GCA and not responding to 60 mg maybe you need to be in hospital and put on a really massive intravenous dose, I think they use methylprednisone. I think it's rare but I'm sure I've heard of people who have needed more than 60 mg. Moreover all this being driven back and forth and never really seeing the right specialist can't be helping one bit.
Hi - I thought I would take this opportunity to speak to someone in the same boat as me and you look as if you’re the nearest. I was diagnosed at the end of June with GCA, having had headaches since January and a stroke in March. I eventually had a PET CT scan in Derriford Hospital, Plymouth, and had a diagnosis. I immediately went on 80mg Prednisolone but then had a heart attack on Aug 11th with a 99% blocked coronary artery. My blood test yesterday shows normal inflammatory markers so I’m praying that the steroids have been doing their job.
What are your symptoms? I find it interesting just to see what other folk are exhibiting as the Vasculitis seems to be so different in everyone.
Well I was probably in the same boat as you - but no longer as I have been off the steroids for nearly 3 years now.
Actually once the diagnosis was made - and that was a saga in itself - my journey through GCA was relatively straightforward- some side effects from steroids of course, but nothing too drastic other than a replacement cataract required.
Both I and my GP learned how to cope with GCA together - my tapering was taken very slowly and as a consequence I never had a flare. I wasn’t pressurised to take any steroid sparing drugs such as methotrexate nor to go at someone else’s pace.
Very boring really until I got to low levels of Pred and my adrenals glands were very sluggish to get going again.
These old posts of mine may give you some idea of how things went for me -
You obviously have more complications with a heart attack as well - do they think the blocked artery was due to GCA or just coincidental and pure bad luck they came at the same time?
I have enjoyed reading all your posts and am do happy that you have come through this dreadful disease. There's hope for me yet.
I'm praying that I can start on the Tocilizumab asap as this seems to be the drug that helps sufferers go into remission. I've been promised it by my rheumatologist as funding has been released.
Good to hear you have funding. I was diagnosed with LVV started with gca but on scan inflammation seen in majority of large vessels, on pred and methotrexate, ,other than initially improving symptoms of gca,,no further improvement,pain and mobility greatly effected, limited energy, if I go for even a short walk, can’t do anything else for hours . Seeing consultant tomorrow and just hoping he has a plan. Also crp 39 this week after being down to 5 !!
I agree with Heron, 60mg may not be enough, 50mg resolved my GCA headaches, but have read some take 80 or more...I weigh 130 lbs. Before dx I had to sit up on couch to "sleep" for more than 6 wks, and I found the only thing that helped at all (prior to pred) was warm/hot compresses. The theory is that the giant cells reduce blood flow (and thus oxygen) to the area and that is what causes this terrible pain. Heat can help to increase blood flow, and even a slight improvement can give relief. Hope you get a better medical solution soon. I went thru this in March, 4 months ago, and will never forget that constant pain.
I agree with the warm damp compresses. Before I was diagnosed I had horrible head pain and that was my only relief. I would microwave damp cloths and lay them over my head.
When you wake up at silly o'clock - a drink and something to eat, say a yoghurt or just a slice of bread, never on an empty stomach, swallow the tablets, go back to sleep and let the tablets get to work, warm shower, skip the soap (too much strips the oils out of your skin) and no shampoo. This can work for some people.
Minnesota is a long way from Florida, a world expert on GCA works at the Mayo located in Minnesota... maybe your Mayo could contact him.............Dr Eric L Matteson M.D. You can put his name in your search engine and read up on him.
Hate to tell you jinasc...he retired. He literally got on a horse and rode off into the sunset. Of course some still have a leg in work when they retire but I read on mayo clinic newsletter thing it was a big bash then he rode off ....
He was a brilliant man. A well deserved retirement methinks but a loss to research.
I have a lovely email from him as he wrote an article for a newsletter which told us how he came to do: steroid side effects, new findings. I think you will have read it, if not - a link:
Thanks. It's one of the articles I am always looking for to pass on so I have added it to my home screen.
I thought it was really nice that has colleagues made sure he got to ride a horse into the sunset as he always wanted. There are a few videos on YouTube so his words go on!
Thanks for your replies. I feel very lucky I can come to my computer and connect with kind people who know what I feel. I will try the warm compress. From reading Dorset Lady's reply, I'm feeling that maybe 60 is too low for right now but I'm not sure I want to sound the alarm to any one for fear of them telling me I have to go on a wild goose chase to an ER over 200 miles away. Maybe I'll raise my dose to 70 and see what happens. I sort of feel like I need someone's ok to go to 70. I keep hoping that something will happen on its own and I will notice when I least expect it that I'm not quite as bad. This whole thing is so frustrating, scary and literally and figuratively, A PAIN IN THE NECK!! (funny .....I remember stressing and freaking out about having to be on 15 pred when all this started with pmr almost a year ago....and now I'm considering 70 pred!)
The dose is all relative to the pain you’re suffering isn’t if? As you say at the beginning 15mg sounds a lot, but when you bring in all the other factors like sight loss etc - 70mg doesn’t sound that unreasonable.
Is there anyone you can speak to on the phone to get the go ahead for 70mg? It may solve the problem as you say.
I have an appt with my rheumy in two weeks. I could always call his office and speak to whoever he left to cover his emergencies but I'm so sick of getting turned around every which way by doctors, I'm afraid he will come up with some other terrible idea. I just may do 70 for a day and see what happens. Then I can go back to the approved 60 I'm on.
I think you need medical advice sooner than that. Will the rheumy have a named locum for emergencies? Though I always get the impression rheumies don't expect to have patients with emergency situations!
Thank you for the advice. I could call whoever my rheumy has asked to take care of his emergencies while on holiday. Right now it is 5:46pm in Florida.....I'll see how I feel in the morning. Right now I'm not too bad. Maybe I won't be so desperate in the morning.
It may do, but it’s not really recommended for GCA, especially early days when the disease is still very active. Although there have been discussions about this over the years, my personal opinion from my own illness is that you need the full dose in one go - and then hope it lasts 24hours.
I’m thinking to seek the council of Dr Kristi Mizelle in Virginia. She specialized in Vasculitis.
My primary auto immune disease is lupus/ APS , and this one ( or a very close sub set of it) is now joking in the auto immune part fun.
Last month My Rheumatoligist gave me an injection of 120mg of solumedrol IM and I felt great for three weeks! No migraines at all. Now I have one every other day so he put me on 5mg starting two days ago. I thing it’s not enough.
I’m thinking to go to 10mg .
My RF is 512... positive cRP, Others are elevated but not terribly high. Positive ANA. ANCA negative but I was already on Rituximab, so it would be a false negative. My monocytes came back at 10. (?)
If we journey together, I find it very helpful and we get there faster with less wrong turns. ( we tend to enjoy the necessary unplanned toad trip much more with friend with us along the way.)
I am surprised that your Rheumatologist did not suggest raising your Pred dose. A number of posters on here have had to go as high as 80 mgs to get their pain and inflammation under control. Is there no one who is qualified to authorise this for you? It sounds dreadful.
My rheumy has raised it every time I have some kind of flare. In the beginning it was just the pmr until gca raised its ugly head. He raised it to 60 then and it did the trick. We went then to 40 after a while. I once asked if I was tapering down slowly enough not to cause another flare and he thought I was. Maybe he was wrong. Anyway, before he went on vacation I thought I had a good day so he told me to stay at 50 then he left on his vacation. The very next day was horrible so since he had prescribed 60 once before and also again last week, I just put myself on 60. Today is the third day. I'm sort of dreading what will happen at 4 in the morning. But then again....maybe I'll be ok!
The pred dose initially should be 1mg per kg of body weight. I started at 65 mg, and the headache was under control within 2 or 3 days. Took about 3 weeks to settle tongue claudication.
re: "my blood test shows pretty definite GPA (granulomatosis with polyangitis). I have had to anca tests and 2 proteinse 3 tests and they show I have the antibodies. My symptoms on the other hand are for GCA. "Presumed GCA" was Mayo's diagnosis. They suggested methotrexate to start with because of the gpa ...and maybe but not likely the gca"
Granulomatosis with Polyangiitis (Wegener's) excerpt:
"How is Granulomatosis with Polyangiitis (Wegener's) diagnosed?
There is not one test for diagnosing GPA. Many things play an important role in diagnosing GPA, including: symptoms, physical examination, laboratory testing and imaging studies such as X-rays, CT scans, or MRI. If the doctor suspects GPA, he/she may order a urinalysis and blood test to measure kidney function (creatinine) and lung imaging through a chest X-ray or CT scan.
The diagnosis of GPA is based on the all the results of the blood tests, X-rays and CT findings, and physical exam findings. Most physicians will recommend a biopsy of the tissues involved. A biopsy of the affected tissue can help confirm the diagnosis.
The most common blood test is an antibody test called ANCA (anti-neutrophil cytoplasmic antibody). This test checks for this antibody in your bloodstream. A blood test positive for ANCA supports the need for further examination for GPA. A positive test does not confirm a diagnosis. A tissue biopsy may still be needed. A negative test does not rule out GPA. Up to 20% of people with GPA can have a negative ANCA test.
How is Granulomatosis with Polyangiitis (Wegener's) treated?
Active GPA causes inflammation within the blood vessels and organs. Ongoing inflammation in the blood vessels or organs can cause organ failure. Without treatment, GPA can worsen rapidly, leading to potentially life-threatening kidney or lung failure. Treatment choices are based on the organs affected, disease severity, and individual medical factors.
Those with active severe disease often receive a glucocorticoid (steroid) medication such as prednisone combined with cyclophosphamide (Cytoxan), a chemotherapy type of medication. Prednisone is started at a high dose and gradually reduced over weeks to months. Cyclophosphamide is given for three - six months; it can be given orally or by injection. Those who improve are then switched to another medication such as methotrexate (Rheumatrex, Trexall) or azathioprine (Imuran, Azasan) for two or more years.
Another option for the treatment of severe granulomatosis with polyangiitis (GPA) is rituximab (Rituxan) combined with glucocorticoids. Rituximab is a medication, given by injecting into the vein, which stops the blood vessel and organ inflammation. The patient and his/her doctor will work together to decide which treatment will be best for the patient. Those with less active disease may be treated with prednisone and methotrexate. Each medication has potential side effects, which need to be considered as part of the treatment plan."
"Although she didn’t realise it at the time, Alicia’s first symptom of Wegener’s Granulomatosis began with headaches in late 2004............................
Christine described the migraine as dull, constant ache in her head. It was far worse than a regular headache. An aspirin or paracetamol wouldn’t take the pain away.
The worst of the migraines lasted two to three days. If the migraine came on on a Friday night, Christine would be unable to function for the whole weekend. "Another Link:
NORD gratefully acknowledges Eric Matteson, MD, Department of Rheumatology, Mayo Clinic, and the Vasculitis Foundation, for assistance in the preparation of this report......
Granulomatosis with polyangiitis (GPA) is a rare disorder characterized by inflammation of small- and medium-sized blood vessels (vasculitis) that results in damage to various organ systems of the body, "
Update: Thank you all for the replies. Mayo clinic assessment was that eventhough I have the antibodies for GPA, they are presuming I have GCA which is what all my symptoms seems to be pointing to. The GPA thing scares me because I know it can rear its ugly head with symptoms. They haven't been able to biopsy anything because lungs, kidneys, sinuses, etc are all clear. And I had already been on pred too long to show anything on a biopsy for the gca either so its sort of like flying blind here.
Anyway, to my update:. Two days ago, I called my rheumy's stand-in to tell him my headache was horrible and he said I shouldn't wait for the scans. When he said I was at high risk of stroke or aneurysm, I didn't argue and went. He also said I should have a spinal tap. I went, scans were clear..thankfully. They admitted me into the hospital in order to see a neurologist re the spinal tap. The hospital gave me methylprednisone shots every 6 hours for the headache which was like magic. The next day (yesterday) the neurologist at the hospital said he didn't think a spinal tap was necessary and they let me come home. I told him that if my stand-in rheumy has a problem with no spinal tap, that I will have them speak to each other because I shouldn't be stuck in the middle of two different doctor's opinions. My hospitalist doctor who is seemed to be interested in all things rheumy so knew a tiny bit more than the average doctor advised me to come home and take 80 mg for a couple of days and see how I feel. I feel fine so I took 70 this morning. After such massive doses at the hospital, and the days before, my sugar this morning was higher than its ever been, I can't get my wedding band on...my shoes are all tight, my collar bones have vanished, I have a hump and my face is getting so wide, I'm about to explode. My emotions are all over the place, I cry a lot. After almost a year of dealing with all this, I sometimes feel like at 73, I'll never be the same as I was before. I have always been very active, a daily walker, love yoga, active social life and it has all dwindled down to going from doctor to doctor who all have different opinions and attitudes and every visit seems to lead to new frustrations. I know a lot of the mood thing has to do with the pred so I just keep thinking about that....till I happen to catch my reflection in the mirror .... I will start the actemra infusion tomorrow and hopefully, that will allow me to start tapering down on the pred. I'm supposed to make an appt with the neuro who ordered the scans to discuss results, I'm supposed to follow up with a lipidologist because my cholesterol is scary high and I can't take statins and I'm feeling so low, I just want to crawl in a hole and forget about doctors and enjoy the fact that my head isn't hurting. I did want to thank you all again for all the advice before I crawl in that hole though.
Just a warning: never use herbal or any other supplements without checking that there are no interactions with any medications or other supplements you may be taking. Your doctor may not know - but a pharmacist should. However - Google is probably the best source of info for drug interactions!
I thoroughly agree. My liver enzymes became highly elevated around the time I began taking collagen in pill form, had bought it at Costco. I took it about 2 months before I discontinued it, wondering if that might be the culprit. Lo and behold, my liver enzymes returned to normal within a short time of stopping it and they remain normal.
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