Hi! I live in California, and just started reading this forum several days ago. I was origiinallly diagnosed by my GP with GCA about 12 years ago. However, the bilateral biopsies were negative, so the the rheumatologist said I didn't have GCA. My GP told me he believed that I did. I was on Prednisone 60mg for about 2 weeks.
Since then, I have had a roller coaster life with regarding the GCA diagnosis. Several times I have been put on Prednisone 60mg for varying amounts of time, and once with Methotrexate.
About 6 months ago, my present rheumatologist diagnosed me with PMR. In mid June, my ESR was 85 and CRP 2.5. I felt terrible, stiffness, pain in shoulders, hips, pelvis, scapular area. I also began having severe headaches and jaw pain.
A week ago, my vision blurred, and I had difficulty reading words with my left eye. I saw an opthalmologist immediately, who diagnosed me with definite GCA. I am now taking 60mg of Prednisone, and started a weekly dose of Methotrexate 10mg, so I can hopefully cut back slowly on the Prednisone.
I am experienceing nearly daily frontal headaches, severe weakness in my legs when I'm fatigued, elevated BP and palpatations between 3-6am. I also have jaw pain off and on during the day. My rheumatologist is rechecking my blood tests in another week, will continue to raise the Methotrexate dose.
I saw my GP for the elevated BP and palpatations yesterday. My EKG was normal, as were my electrolyte results.
Have any of you experienced some of these symptoms, or have any suggestions for me. I do think I am trying to do too much right now, and need to rest. Getting very little sleep from 3-6am. Started Melatonin 3mg and Passionflower tea last night per GP.
Thanks so much. So glad to have found this sight. My next post won't be nearly so long.
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Joyful13
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Joyful I am so sorry you have had such a rough time for so long. The symptoms you describe sound classic GCA/PMR. It really is a nasty illness. It sounds like you have a good GP which is a real advantage. You are right you really need to rest and give into it. Start to pamper yourself it can really raise your spirits.
Thanks piglette! I really appreciate your concern and thoughtfulness. I plan to spend the next couple of days just resting and walking with our dogs. My rheumatologist said she was going to treat this as a "new diagnosis, and treat me for several years.
It will be great to have the connection with all of you who understand personally what we are all going through.
You really have been through it but now your rheumatologist is treating you as a new diagnosis, hopefully you will now, at last, finally, be receiving a recovery care plan suitable for your condition.
I would also be tempted to look up the Bristol PMR plan, this plan is what any good Dr should be treating us by. There is a section dedicated to GCA. Many of us though when we eventually hit the 10mgs stage, then reduce even slower than the plan suggests in order to reduce the risk of any flares.
My only concern regarding your treatment plan is the introduction of mtx. Mtx is a steriod sparing drug that can, not always, allow us to take lower doses of steriods. However, these drugs come with their own side effects, and do nothing for the inflamation which is at the heart of PMR/GCA. So what I am saying is you will always need steriods to keep the inflamation in check and if you are taking the 2 drugs then it's a difficult balancing act to achieve. many patients taking both drugs have experienced more than average flares of the inflamation because consultants have reduced the steriods too far thinking the mtx will balance the reduction out when it doesn't. You say you live in America, well in England mtx is not normally given as first instance treatment, it tends to be introduced further on down the recovery process if patients find problems with lowering the steriods.
The palpitations could be one or other of the drugs or they could be simply too much caffeine!! I went to my Dr complaining of palpitations only to be told to reduce my daily tea and coffee intake!
My blood pressure rose too, which is quite normal with these conditions and or the medications. I have just recently started by tablets, only 3.75 of ramipril and I definately feel a whole lot better.
Now to your herbal suppliments. I take various suppliments including, vit c and d, b complex, calcium and magnesium. However, I take these suppliments to counter act the side effects of the medication. Steriods are notorious for bone wastage therefor the vit d, calcium and magnesium is good for that, while the vit c helps my immune system as steriods lower our immune systems further. All that aside, always ensure that any suppliments whether they teas or creams or pills are compatible with the medication and don't have a contra effect, just because they are natural doesn't mean that they are good for us currently.
Your daily headaches could be the mtx, look up any possible side effects of any medication you are on and report back to your primary Dr.
All that remains is to echo piglette, both these conditions are taking a huge toll on us and so we must calm down and not over do things. I try and live my life as near normal as possible but if I am ever fatigued I calm down. The fatigue is telling me that my body has had enough and as hard as it might be I now respect this a calm down.
Thank you tina-shelley for all the helpful information and some of your own personal experiences. My rheumatologist is aware that the Methotrexate may not be sufficient, so I'm sure that I will be very slowly decreasing the Prednisone. I am taking the supplements that you mentioned as well. Unfortunately, I am on many other medications for other health issues, so it is hard to know what side effects I am experiencing from just the Prednisone.
I will look up the Bristol PMR plan. I am so impressed with the amount of info about PMR/GCA in the UK for the patient! There seems to be so little here.
You have my full sympathy. Like you I have had a long haul with PMR/GCA - fifteen years in all. The only caution I would advise is with passionflower in any form. This can cause palpitations and I was warned against it as I have an arrhythmic heart condition (SVT). It might be better to take camomile tea at bedtime and try to rest whenever you feel fatigued during the day - I know it's more easily said than done, especially for those of us who have always been active - and have dogs begging for their walk! Good luck and take care.
Thanks for the info about passionflower. My GP was the one who suggested a tea with this ingredient to help me sleep at night. I will try the chamomile tea, as I've taken this for many years. The palpitations are during the night, especially from 3-6am, that is also when my blood pressure goes up.
What a long haul with GCA, and now PMR, you have been experiencing. Perhaps over the years, your starting doses each time have been reduced too quickly and not been sufficient to control the inflammation and keep it under control. Hopefully you are now starting afresh and will be under the guidance of medics who are more familiar with the latest research findings, especially with regard to the need for a much slower tapering routine for the many sufferers who don't achieve success following advice to reduce in textbook fashion.
The palpitations you mention are very likely due to the high starting dose of steroids (the 40mg starting dose had me in A&E within a couple of days with heart rhythm all over the place). But passionflower tea could also be contributing as it has the potential to cause a rapid heart rate. Coffee will aggravate it (I avoided coffee and switched to decaf tea).
As for Melatonin, it can increase the immune system. Taking it along with medications that decrease the immune system can reduce the effectiveness of medications that decrease the immune system, including Prednisone/Prednisolone.
It is very important that when taking Pred, we never take any other remedies, including herbal over-the-counter preparations, without first seeking the advice of a pharmacist as to whether there might be any possible interactions.
If you haven't read Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', then I and others can strongly recommend it. It is available on Amazon or direct from our National Organisation, PMRGCAuk, website pmrgcauk.com. All royalties from the sale are donated to PMRGCAuk.
I do hope you will have a much more successful journey to remission this time - meanwhile, do keep in touch and let us know how you get on, and we will try and answer any questions that may crop up in the meantime.
Wow!, I learn something new with each person's reply. I did read Kate Gilbert's book, and plan to read it again slowly. It is wonderful. Her book told me about this forum.
I have only taken the Melatonin two nights. It seemed to help until 3am when the palpitations started and awakened me. I will definitely do some more checking about this medication. I appreciate the word again about Passionflower.
Thanks so much for your reply. Have a wonderful day.
Thanks for the info about taking Pred. I'm just on a short term dose of 40 Pred while they investigate if I have GCA and I've been having palpitations and a bit of breathlessness which worried me, yet BP is fine. Also the tip on melatonin, I bought some a couple of years ago to help me sleep but I felt wierd so only had it twice.
Hi Joyful. I also live in California...Rancho Palos Verdes, just south of LA. Are you close ? I have had Temporal arteritis for three years and PMR for almost one . I was also diagnosed by an eye doctor who has saved my eyesight twice. Be careful with reducing too quickly, as you will learn on here...it does cause flares which then make you repeat the whole process. They are big on Methotrexate here in California for some reason. I tried it for a short time and it made me feel awful so I stopped. They will also try and get you on Actrema. Check that out carefully!!! I have learned that there seems to be only one thing that really controls this disease and that is prednisone ....and I have found that I can control some of the side effects you mention by splitting my dosage so I am not getting so much at one time. Also, as you will learn from others that taking some in the wee hours does help with the sleep I have been told , by the eye doctor,,that our bodies produce cortisol around 5 in the morning....if they were working properly....so I guess that is why we wake up at that time. Also in Europe they have time released prednisone which is not as yet available in the US. for some unknown reason. My doctor told me she had samples but could not prescribe it. Let me know how far away you are.
I live in Sonoma, CA, about an hour north of San Francisco in the wine country. Thanks for your suggestion about splitting the Prednisone dosage; I might try that when I start waking up at 3am.
I took Methotrexate several years ago with a flare up, but didn't notice any side effects. This is a trial and error using the Methotrexate, but I'm still on Prednisone 60mg at this point, and slowly will build up the Methotrexate. I haven't heard of the Actrema. I'll look that one up.
I do now have some vision loss in the left eye, so don't want to lose more. I had a blood clot on the optic nerve in that eye several years ago which slowly absorbed. I was extremely fortunate that I did not lose any permanent vision at that time. I also have glaucoma, and unfortunately the Prednisone raises my eye pressures. One day at a time.
Like you I had raised glaucoma pressures when I was on high doses of Pred (started in 80mg, having already lost sight in one eye through late diagnosis). Fortunately not high enough to require medication, just monitored.
I also developed a cataract on my good eye, another side effect of prolonged Pred. That was successfully operated on last August.
Good news is, once I got down to lower figures my glaucoma pressures reduced back down to normal, in fact had them checked yesterday during a normal routine eye and they're fine.
It seems ironic that the drug that saved my left eye also contributes to its problems! But I guess that's life.
What I really wanted to convey is that your glaucoma pressures will improve as you reduce the Pred.
It's a long and difficult journey we all travel, but we get there in the end. Take care.
I was really amazed by what you have gone through with your eyes. I'm so glad that your eyes seem to be more stable now.
Did it take a long time to adjust to the vision loss in your right eye. What kinds of help did you receive with this vision loss. Did any of the vision return? I hope you don't mind my asking you these questions. Only answer, if you are comfortable.
Thanks for your encouragement and that the glaucoma pressures will go down with the prednisone dosage.
Hi Joyful,Thanks for your comments. Don't have a problem talking about mine, in fact I do quite often, as a warning to others really.
To cut a long story short, I had undiagnosed GCA and probably PMR for about 18 months when my eye problem started. Blurriness in bottom of eye one night, which slowly increased up eye, until three days later I could see nothing. Trip to local A&E confirmed TA/GCA. the sight in that eye has never returned, although the light is still getting to my retina in the bottom quadrant - say between 4 and 6 on a clock face (if that makes sense) and I can just make out objects if held close to my cheek, I cannot see defined outlines. When I close good eye, and just look through other one, it's not black, but like looking through a very, very thick fog.
Because the sight loss was very quick, it took my brain quite a few months to adjust properly, and I had headaches etc, found it difficult to watch TV and read, and didn't drive for about 6 months (my choice, I didn't feel confident, and my late husband could) but legally you can drive after a couple of months so long as you can pass the UK sight test.
The most difficult thing is only seeing in one dimension - its difficult to see edges of things - tables, cups, (pouring hot water to make a coffee was a nightmare), stairs, stepping off pavements (sidewalks) onto the road, switches on radios,TV etc when they're all black.
Things are still a bit difficult at times, like threading a needle, but generally I have adapted. Drive my car no problem, have been to New Zealand on my own to visit my daughter.
I received no help, losing the sight in one eye is not classed as a disability, or even a problem in the UK. Not strictly true!
The sight will never return, because the optic nerve was too badly damaged with the GCA. I believe there are two different ways your sight can be affected by GCA, either the retina is damaged or the optic nerve is. Whether that makes a difference to recovery I don't know. Maybe if mine had been diagnosed when only partially lost it might have recovered I don't know, but it is what it is!
I'm just very thankful I have the sight in one eye, so easily could have lost both.
I've always been a "half glass full" person, and intend to remain so despite what life's thrown at me the last 4 or 5 years. As my late hubby, an ex military man, used to say " don't let the b******** grind you down " keep well, Sue
Thank you so much for sharing with me. I am honored to hear your story about losing your vision, but continuing on with your life in such a positive way. I am also deeply inspired by your attitude and gratefulness with having vision in one eye.
I am surprised that the UK does not see this kind of vision loss as any type of disability.
I have several friends who have had severe vision loss the past few years, but are not completely blind in either eye. One, especially has received so much help from the Association for the Blind, including a special computer, audible book program, etc. She also leads a support group for women who have severe vision loss, and has really been blessed by this group.
I wasn't aware of the two ways GCA affects the eye, through the retina or the optic nerve. My vision loss seems to have affected the optic nerve. However, I can still see out of my left eye. I, too, feel so fortunate that I have complete vision in the right eye.
I think in the UK you also get help if you have such things as Macular Degeneration, or similar which affects both eyes, but because my good one is fine, then the powers to be deem you can live life as normal, which you can, albeit with some moderation, and a little frustration at times.
Most of the time it's not a great problem, I just need better lighting that some, and if I'm reading something that's not black on white then it's a struggle sometimes. Thank goodness for computers etc where you can increase the print. I'm fine outside with long distances. It's just close work and fiddly things that irritate me. I'm very independent, but sometimes I just have to ask others to do it.
It's surprising how we adapt to our problems isn't it?
Keep in touch, and let us know how you are getting on please. We like to hear of people's successes, not just their problems, it keeps us all motivated!
I've read here that the modified release pred IS available in the US and called Rayos. We can't get it on the NHS in the UK. What we do have is 'gastro-resistant' pred, which is coated to help protect our stomach, but it's not time-released. In mainland Europe Rayos is called Lodotra - PMRpro is on that in Italy.
I did not fully comprehend that you were still on 60 of prednisone. On that high a dosage, I would check with the doctor first. It is generally 2/3 and 1/3. for the split. I also had the hemorrhage...which did clear up in time. The Actrema is a biologic that they give infusions of once a month. Like Methx.it is a steroid sparer. It has been approved to help R.A. but is still being tested for TA.
My oldest daughter lives in Palo Alto and Portola Valley so when I get better I am hoping to get up to see her. Keep in touch.
Thanks for the update! Sorry, you also had the hemorrhage, but glad to hear that it cleared up in time. Thanks for the info on Actrema. We have children and grandchildren living in San Francisco and Millbrae. Take care. I will keep in touch.
The University of Cleveland Medical Centre site says
"Steroids and immunosuppressant medications -- People should not take melatonin with corticosteroids or other medications used to suppress the immune system because the supplement may cause them to be ineffective.
You are right - REST! You need to behave as if you are a "poorly person"! Rest is essential even if you can't sleep. Try to plan rest periods - you may even fall asleep! And don't feel you have to do the shopping/cleaning/other housework - if you had severe flu you wouldn't, GCA is even harder on your body even though you can't see it.
If the palpitations are bad do get it checked because I have atrial fibrillation which was caused by the autoimmune part of the PMR/GCA - it has damaged the electrical cells in the heart that manage the heart rate. I'm on medication and have no problems at all - but the GP was too hasty to blame pred. They were very intermittent at first so never happened when I saw him. Pred gets blamed for a lot of things that are actually part of the GCA/PMR.
Thanks for the info about Melatonin. I will definitely consider stopping it.
I also appreciate your personal experience with palpatations and resulting atrial fibrillation. My Mom and sister both have atrial fibrillation, and Mom has PMR. My GP said if the palpatations continued to let her know and she is going to refer me to a cardiologist. I'm on a constant learning curve right now, and so appreciate the information.
My name is Bill Long. I also live in California. Have the very same issues that you have. Would really like to see where your at today with your treatment and current condition and what medications your on. Especially if its working for you. I live in Mariposa, Ca. Hope to hear from you.
Probably your sleep will be interrupted inevitably because of the high dose of prednisone so the suggestion to grab rest whenever you can is a good one. Like having a demanding baby in the house. Things will get better as your dose lowers. I haven't had to take such a high dose but I speak from the perspective of a lifelong intermittent insomniac. Many a night I've spent doing the equivalent of counting sheep, or giving up and reading in the livingroom. In fact it was during such a sleepless night early in my PMR/pred journey that I discovered the forums. However, since I started taking one of my calcium doses with a small snack, usually involving a little plain yoghurt, shortly before bedtime I have literally had about three nights where I didn't sleep well. That would be in over two years! And each time there was a reason for my wakefulness, not just the old random insomnia. I have heard others say they've had a similar experience from taking magnesium, but I'm one of those who doesn't seem able to tolerate magnesium in capsule form so haven't tested it.
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following on from my last post …….Turns out no PMR or GCA
Globus sensation and PMR/GCA
Worried about PMR & GCA
PMR - increased risk of GCA
PMR TO GCA OR WAS IT ALWAYS GCA? UP PRED?
