When I was first diagnosed with PMR the doctor gave me a pamphlet, and I read about GCA, and thought I had some of its symptoms - including itchy top scalp, trouble swallowing, gritty blurry eyes, and temple pain. When I took the first doses of prednisone I felt so much better! Besides the pain relief in body, I also felt relief in scalp, swallowing, and my eyes felt so clear I was very happy. But when I told the doctor, he immediately discounted my suggestion by saying, "Oh, no you don't have GCA!" He was basing this, I guess, on my 40 number of the "sed rate" which wasn't that high, he said. Now I'm on 10 mg a day of pred. my eyes are irritating me and swallowing is iffy. Any info or opinions would be appreciated.
Hi Debbie, I read your posting with interest. My husband was diagnosed with pmr last August. What an insidious thing it is. I go on this site to get information and end up by worrying. He has never googled anything about it and just want it to go away. Is it a man thing? I notice his eyes are red and sore looking and his skin is very dry. I encouraged him to get eyedrops for dry eyes and this seems to have helped. It is like living with a stranger, I know he is in pain, but he grunts and groans and I am worried he will go into depression. He is on 10 mg of pred a day and 71/2 the next day. I just think if you are on this medication you might as well be on a dose that is doing some good. His legs ache and I see him turning his wrists alot, often a finger with straighten out. I would be interested from anyone how I can best support him. He is also drinking more than he should but has always had a beer and doesn't see the need to cut back. I do as much as I can with anti inflammatory foods but I feel he needs to be more proactive. He has never been sick or taken tablets in his life so this is a huge change for him. I really feel for him as I do for all the others on this site. Any suggestions? Carol
Hi Debbie - you dont say what dose you began with or how quickly you have come down to 10mg.
About the other symptoms - I am no expert but I feel it would be wise fot your GP toup your meds and send you to a Rheumatologist for more tests. I hope someone with more knowledge than me and answers this soon.
Oops...sorry about the typo's - Debbie if you get really worried, go to A and E.
Hello caz and I'm sorry to hear about your husband. It does sound as though he isn't on a sufficiently high steroid dose to control the inflammation at the moment. Certainly the 10mg dose can be a sticking point for many people and some patients have found they need to stay at this dose for longer than at previous doses. Some also find it helpful to reduce in half mg decrements, whilst others try reducing on just a couple of days of the week at first.
His dry skin is a side effect of the steroids and this can be helped by using Double Base Cream or Gel which is available both over the counter and on prescription. It was recommended to me by my podiatrist for the dry skin on the soles of my feet and I found it worked wonders on my body. Many other PMR patients are now using it - some of them even use it to wash rather than soap.
As for how you can "best support him", I think you're doing a great job already especially with the anti-iinflammatory foods - I'm a great believer in those". The best thing you can do is make sure that he doesn't reduce too quickly or in too large amounts - he is still in the early-ish days following diagnosis, and flares in the inflammation can be quite common in the first 12-18 months. Good luck!
Hi Debbie, I would say you definately have GCA. It took years for my husband to be diagnosed. His ESR was always ok. He had the same symptoms as you. They finally did a CRP test which was very raised. This showed there was some form of inflamation. Is your Doctor a specialist? If not you should see one. Also an eye specialist. I think it's obvious you've got GCA.
Debbie, I've just replied to you on another thread, and thought I had replied here to your latest post but it hasn't appeared. Now that you have mentioned your concerns about possible GCA, as the others have said, do get yourself off to an ophthalmologist or to an Accident and Emergency Department to check for GCA as quickly as possible. Your Dr is wrong if he believes that you have to have high blood test markers with GCA - some sufferers don't have raised markers at all. Do let us know how you get on.
Haven't got a clue how that red printing got into my post!
Thank you all. I'm not sure where I reply, but maybe this will go to the end. It was when I finally went to a rheumitologist that the PMR was diagnosed, and he is the one who discounted my GCA fears, too. I started with a cortisone shot in the knee and I think it was 40mg of prednisone, which he wanted me to cut down when I saw him the next month. So over five months I've gone down from 40 to 10. I dislike the pred. because it makes me hungry and I'm already way overweight from fibromyalgia and depression (and laziness?), but it did help with the PMR at first. Do you think prednisone is better than taking pain pills? I see the rheum. next month, but I think I'll call him next week.
Debbie - I had a similar experience with the sore scalp, throat problems and sore and blurring eyes plus jaw pain but not sore temples for several weeks during the 5 years I had PMR before I was finally given pred but they disappeared again. The eye problems returned after a couple of years on pred and my rheumy put me back to 15mg to see if this was enough. It was. He said he agreed with me that I almost certainy had GCA but it was not affecting the blood flow to the optic nerve. It is possible to have GCA in other arteries so you get some of the symptoms but it doesn't get as far as damaging the optic nerve. I've never had a raised ESR (it has never got to double figures) and it is thought that about a fifth of GCA patients don't have a raised blood level. 40 is the borderline to consider a problem other than maybe a cold or something. Many doctors won't consider anything that isn't the worst headache you've ever had, and really bad symptoms as being GCA. They also seem to think patients will panic if they think it is.
PMR does often involve dry eyes - much like Sjogrens syndrome and artificial tears of some sort will help. Is the swallowing problem worse in the morning? It could be silent reflux and zantac or something similar would help that. The higher pred would calm down the inflammation from that too. Try that first - and if it doesn't help you could try pushing him about doing something to identify what the symptoms are. An optician can also advise you on the eye part - they can examine the back of your eye and see if the optic nerve is OK.
Debbie
Do you think prednisone is better than taking pain pills?
During my PMR/GCA/steroid days I always felt that rather than take pain pills (or any pill come to that), it was better to take sufficient dose of steroids to control the inflammation at the time - certainly it isn't wise to take anti-inflammatories (NSAIDs) with steroids. I felt that steroids were quite enough to be putting into my body without adding in other nasties. However, it's a personal decision of course.
Yes, I definitely think pred is better than pain pills for PMR because pain pills don't do anything about the stiffness and very little about the pain. That leaves you unable to exercise and that itself is as bad as pred for putting on weight and things.
Cutting processed carbs will help the weight gain - it stops the plunging blood sugar levels that make us crave food, especially more carb. Loads of veggies provide all the carbs you need and fill you up. Sugar and starch are not needed by the body at all really.
Thanks for your info. How did the doctor test to see if the GCA was affecting the optic nerve, I wonder? I just went to the eye dr to have my eyes tested. I didn't mention this worry, but he said my eyes looked healthy. Has anyone here actually gone blind like they say might happen?
Yes, people do go blind but you won't find them on a forum like this for obvious reasons. It is estimated that something like 3,000 people a year in the UK have GCA-related visual problems which affect them long term. A site aimed at healthcare professionals says about 20% of GCA patients develop permanent visual problems.
Did the eye doctor put drops in your eyes to make your pupil wide and then use something like binocculars to look at the back of your eye? Actually looking at the back of your eye is the only way - the optic nerve runs from the back of the eye and can be seen clearly. Its appearance changes when it has been starved of blood. There are a couple of things that can cause it - all reduce the blood supply. You should always tell a healthcare professional if you have any particular concerns relating to their specialist area - with the best will in the world they aren't mind-readers and there are some things that aren't done without reason or they would look much more carefully.
Thanks, EileenH. I know I should have voiced my concerns, but having done so to two different drs and been thought silly for worrying, I got scared, I guess. I'm a very shy person, and besides the drs blame a lot of my worry on my depression, which may be true. But I'll be brave and bring it up with the rheumitologist again next appt. ! I like this forum.
Yes, the dr looked in my eyes and said they looked healthy, except for some "floaters" on my right eye.
Debbie, you shouldn't be made to "feel silly for worrying" by any medic. I understand it must be difficult if you are a shy person, but it's your body and if you have questions about it, it is their job to answer those questions wherever possible and to reassure you. That's what they're paid for. Some patients find it easier if they write down things they want to ask and take the list with them. Meanwhile, ask away here and we'll be only too happy to try and help from our experience.
Thanks, MrsO. I have taken in lists, but sometimes I'm too shy to bring them out of my purse! haha. You are right, though, and I'm strong when I muster myself, so I'll try.
If you struggle on your own - take a friend or your partner. If a doctor is being intimidating they often back down and become quite helpful. Or try writing a letter/a diary to them and hand it over and ask them to read it. Especially about how badly it is affecting you - that sometimes gets through.
Hi. I agree with Eileen bout taking someone with you to the docs. I find they are a lot more anxious to listen you then! My eyes have been dreadful since my diagnosis, very bloodshot and sore. My optician explained that there are three fluids over the eye and in pmr the oil layer (not the water/tear layer) can be destroyed. He prescribed 'Isopto' drops four times a day. They have really helped. Funny how they call it 'dry' eyes when I don't know about you but mine seem to water all day long! Apparently the eye tries to replace the oil by over producing water. I am also getting throat troubles, not sore but dry and 'catchy'. I find I have regular choking fits when eating. Maybe it's part of the oral thrush? Does anyone have experience with this? My newest prescroption of pred are all 'coated'. I am hoping this will help.