Hi all, going to have a big moan as very depressed this week.
My GCA has for some reason has come back on very bad indeed.
I am still at 7.5mg and have not tried to taper lately.
My head etc is driving me mad with pain etc and I feel like I am going to crack up that's how bad it's been all week.
Tomorrow I am going up to 10mg and hope this will solve my problem.
I have no idea why it has come on this bad, just like when I first got it nearly 5 years ago !!
As you all know I have never gone into remission yet, think my adrenaline glands are hiding deep inside and locked away !!
Do you think 10mg will solve my problem if I again try for a week first ???
My PMR is just about staying at bay a
Which I can cope with, I just want my head etc to stop !! It honestly feels like I am going to have a breakdown which is not nice, why has it all started again - oh and I am having a job of eating, appetite just gone so having nourishment drinks twice a day because of my diabetes and fruit which seems to be the only things my stomach can handle.
Sorry for not being happy this time but I have nothing to smile about this week.
Margaret 🙁
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Margaret1951
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Sorry to hear you're under the weather (to put it mildly!).
Just a quick reply as I'm sure the Aunties will be along shortly with their expert advice.
Who knows why your GCA has come back with a vengeance..? These flares sometimes are a complete mystery. My only worry is that, if your GCA symptoms are as bad as you say, you might need to get some urgent medical attention (e.g. blood tests etc) rather than guess at things pred-wise? Better safe than sorry, and from what I've learned about GCA you can't afford to take chances..
That said, sit tight and wait for the experts here to give their opinion - hopefully this evening. Hope you feel better as soon as things are under control again - I can only imagine how awful (and worried) you must feel.
So sorry to read that, Margaret, and I'm afraid I am not experienced enough to advise you. Just wanted you to know I, and I'm sure many others, are willing you to feel better soon. It must be so dreadful having head pains so severe. I do hope someone will be able to help you. A virtual hug from me.
If you really think this is a flare of GCA you need to see a doctor asap and probably need more than 10mg.
Some people just do have longer lasting PMR and GCA and develop flares. I've had PMR for 13 years and as far as I know it has never gone away - plus I have definitely had at least 3 big flares meaning I had to go back to the beginning with pred. I know that isn't much comfort to you - but that is the way it is.
Thank you PMRpro, I will make appointment this week to see him.
Not due for bloods until early September so he will do one for me as he is very good.
I put it off as when like this I break down in front of him and cry !! And I get embarrassed as don't like anyone to see me cry.
This morning was the worst as when I was showering felt like someone was finger tapping my whole head and face, it was awefull ! I tried slowly massaging the shampoo in but did not help.
Pain in eye and down one side face and neck, just like having bad toothache.
I have been so tired all week with it , even my 2 chihuahuas have been cuddling up to me when laying on my sofa and looking at me with sympathy bless them.
Tonight all I could eat was a small bag of flatbread thin bites and a pear but may have bowl of cereal before bed as dogs woke me at 3.30 this morning jumping at side of my bed so tested blood and it dropped to 3.8 which is low for me.
So in bed eating jelly babies and biscuits ( yuk )that time of morning is disgusting.
I have actually lost half stone this week cause of pain and not eating properly. Not good.
Thank you again for advice and will see what my doctor says but hope he does not increase to much (sigh)
Nothing wrong with breaking down - he might get the message how bad you feel! But I'd be happier if it was an emergency appointment tomorrow and not just "sometime this week"!
Does it get me down? 99% of the time no, not really. I won't deny that occasionally I look at my daily pill quota - most of which are not for PMR - and wish I could just chuck them away. But I won't compromise on the pred, I take what I need and the local doctors don't argue. So I am rarely in pain and I have no apparent side effects from the pred. That'll do me - worse things happen at sea and PMR won't kill me.
Don't worry about breaking down in front of GP. I know exactly how you feel - I was originally diagnosed as having severe Vitamin D deficiency but pain didn't go away with vitamin tablets (hardly surprising) so I went back after 2 more (horrendous) weeks, burst into tears (I am normally an extremely happy person, if not a bit mad really) and clearly frightened my GP to death!! He leapt into action, turns out I had/have PMR and am now (with all the wonderful advice I've read here) reducing from 20mg - now at 9mg and still going. GP now asks my viewpoint on PMR as, clearly, he and many other GP's, doesn't have much of a clue as to what to do with this awful disease. So hang on in there, take all advice given here, advice given by "professionals" with a pinch of salt and you WILL get through this horrible time. Really hope you feel much better soon - and be kind to yourself!!!
Sorry to hear you're going through such a bad time. As others have said, if you have head problems then you really need to see doctor asap. Plus you need considerably more than 10mg of Pred if it's a GCA flare.
I appreciate that your diabetes isn't helping at the moment, but your priority needs to be your GCA. If you break down in front of doctor, so what, it will confirm how bad things are for you at the moment, and hopefully will nudge him into action.
The reason why you, or anyone, has a flare - you've gone below the level of Pred that your body needs to control the inflammation caused by the GCA.
Almost everybody is started on a higher dose than they need on a day to day basis, and that's to get the built-up inflammation under control. Then you need to reduce slowly to find the level of Pred you need to control the inflammation daily.
That figure obviously varies from person to person, and sometimes day to day, depending on other factors - like a virus, a cold, stress, etc. which can all affect your illness.
That's why us "oldies" or "Aunties" are always saying reduce slowly (in time) and in little steps (in dose) - that way you are less likely to go below the level of Pred you need. And much less likely to have a flare.
Thank you again, stress ? I have been this with my 97 young Aunty just lately!!
She is in my local Bupa nursing home and she is so demanding with me !
It's do this and do that and I hardly sit down but I love her to bits.
I go there 3 times a week as it's only 10 mins away.
I am normally there 2 or 3 hours you can pick her up and put her in your pocket as she is tiny and like a skeleton but still gives me grief !
This GCA and PMR are strange things and will never fully understand as to how and why.
I know I shouldn't of but just had bowl of frosties and really enjoyed them as I just fancied them!!thats because I am not feeling as down after talking to you all, so thank you everyone x
So far this morning only a bit there after 10mg fingers crossed but know in my mind I need more. Think it's psychological knowing I am going doctors ! But PMR not there this morning ! And cleaned my living room after a week of pains !!
As writing this my head hmmm
Take it easy now for the day till Doctors, will let you know the outcome x
Can partly understand how you must feel Margaret, after personally trying for a year to reduce down from 20 mg after initially reaching 10 mg with PMR and then developing GCA. The pain in the head and all your other symptoms must make you feel so low and also not to be able to eat is also very hard. I agree with PMRpro that you need to make urgent appointment with GP tomorrow to discuss where you're at and maybe come to terms with going higher than 10 mg . I would say don't wait for an appointment to come up this week. I would also say that you have given it enough time already to see that things are not improving and you need to take some urgent action. The fact that you get upset or may get upset isn't a bad thing because then he/ she can see exactly how this is affecting you. I know I once remarked to my sister in law that my GP was not taking me seriously and how much in pain I was. My sister in law asked if I always went to the surgery with my make up on? - yes. Did I ever cry- no, even though I felt like it at the time because of the severe head pain. Then she said that I wasn't giving an accurate picture of what was going on. Don't worry about getting upset - sometimes the pain, the medication itself, and the frustration of suddenly for no reason at all everything going pearshaped is enough to make us feel low. I would imagine too that you also feel worried about what dose you will be put on but at the moment you're taking steroids without getting any good result. I would also imagine that having reached 7.5 mg it won't take you as long to come down again. Do let us know how you get on. Virtual hugs. X Jackie
Thank you for your kind words I really appreciate this from you all.
I do know my doctor will not be happy that I have not been to see him, when I first got this my other doctor told me off as it was 6 weeks before I saw her as I thought I had a brain tumour !!!!
I kept putting it off because I was petrified I had one !!
I know we are supposed to go but I just kept holding back !
I can understand the feeling of fear. Fear is more often driven by the 'unknown'. Five years ago you thought your symptoms may have been a brain tumour which, in anyone's book, is scarey. At this point in your life you were thinking the worst and fear of the Unknown, along with your perception of worst case scenario, kept you from going to seek medical help, which put you at risk at the time.
Strangely, in contrast to your reaction five years ago, fear of GCA (I was diagnosed with PMR a month ago and thought I was heading towards permanent paralysis prior to diagnosis) drove me to A&E last Thursday, immediately following a strange episode with my sight. All I knew of GCA was that you could lose your sight if not treated, the rest was unknown hence the fear.
Blood tests taken immediately at A&E, with results back within two hours, were negative for GCA indicators. My phsychological relief was almost immediate. Docs were fantastic and I have follow up at stroke clinic this week coming, just to check it was not a TIA. My point being it is probably a red herring, but I am no longer stressed because I know I am being monitored, investigated and looked after. Stress will undoubtedly negatively affect you both physically and mentally making how you are feeling worse.
This time you can take an educated guess that it is highly likely to be a flare of GCA because you state," I have no idea why it has come on so bad, Just like when I got it nearly five years ago." If your symptoms lead you to believe this then you have nothing to fear for you have been there before. You therefore know from experience that things can get better, with medical support, from here.
You also know the risks you are taking if you do not seek immediate medical attention should it be GCA. My advice reinforces what the others have said - seek an emergency appointment either with GP or at A&E so that you get the meds you need to control it and make you more comfortable.
Just to let you know that you are not alone with the symptoms that you are experiencing at the moment. Like you, I have had GCA for a long time (4 years) & in the beginning I also thought it was a brain tumour having never heard of GCA. In May this year I had a bad flare & all the old symptoms came back. I arranged to see my GP & my steroids were increased to 20mg from 6.5.mg. The relief came within a couple of days & I have been able to reduce back down to 8.5mg during the last couple of months. I agree with the others about finding the right dose to keep the inflammation at bay and for me it is around 7-8mg.
Hi Margaret - sorry to read you are going through it all again. My GCA is monitored by my local district health board hospital (Rheumatology Dept) and my doctor in Auckland. So far, what they've said, the regimen of medications - Prednisone, Omeprazole, asprin, and Fosamax (Vitamin D) - have been spot on. They explained in detail what is happening which made such a difference in coping with 'the myseries'. As rheumy says, I'm on the home run now (after 8 months). Each time steroid dosage has been reduced, there's been a slight resurgence of symptoms. Medics told me to expect this as part of inner workings, when the adrenal glands are learning to adjust; it will settle. And it does.
So sorry to hear you are suffering Margaret 1951. It interesting to hear you are experiencing poor appetite. I too have had lots of stomach problems since being diagnosed with GCA two and a half years ago. At one point I lost 10 1/2 Kilos ( roughly 2.1/2 stone ) I am now tapering preds from 60mg. Initially to 4mg. I also requested coated predisnolone which seems to have helped along with 300mg ranitidine taken at night. I still have bad days of hardly eating much, and I wonder is it my stomach doesn't like preds or is it a side effect of GCA. I have had numerous tests. All negative, but would love some answers.
Oh well folks, upped to 12.5mg this morning, good or bad thing. Had headache and just did my blood glucose, because of increased preds my blood was 22.6 !!!!!!! Now have to keep an eye out with my diabetes again. Never rains but pours with me !!
My Doctor does know this happens and said this is normal and keep checking myself.
I have had diabetes for 17 years. Remind me has Dr prescribed anything for treatment?
I am on insulin for first time since taking pred. I would just be tempted to test first thing in the morning before pred/breakfast. What is the point of continually pricking fingers if it's definitely going to be high?
I was over-testing and getting worried that even with insulin, metformin and duglatide I was getting high teens before lunch. Diabetes nurse said stop testing so much. so now I test first thing and BEfore tea (mainly to adjust insulin dose). I have to test if driving and can still be in high teens. I am in fact having my blood tests today for HBA1C among other things. That is the main thing...to get that down from 100 plus it was in February. (used different measure).
I agree! I have spent last 5 years trying to avoid insulin. lost weight etc. I used to read that it wasn't scary and made you feel better. Didn't want to find out. But have got to say I have felt sooo much better since I got it. The modern pens are painless and you don't need to keep in fridge. Still hoping I can stop insulin once pred stops, mainly because of driving. But got to say apart from pred highs I have been really stable and in fact had no hypos ....touch wood.
also on plus side getting sleep because not up 10 times a nite for pee or drinks.
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