wondering

So sorry again, that post was for someone else, probably, but I read all the threads pertaining to PMR and GPA, so I hope our doesn't matter too much 😱

I understand your post, 

Mimi - Don't forget to mention that hearing problem - I doubt they will register it as it isn't often taken as part of GCA but it is currently the subject of a survey being carried out, originating in the UK but for any nationality patient to complete:

https://patient.info/forums/discuss/research-project--535782

Medscape says

"In 2003, Amor-Dorado et al[60] reported a previously unrecognized high incidence of audiovestibular disturbances such as vestibular dysfunction and/or hearing impairment in their GCA patients."

(Amor-Dorado JC, Llorca J, Garcia-Porrua C, Costa C, Perez-Fernandez N, Gonzalez-Gay MA. Audiovestibular manifestations in giant cell arteritis: a prospective study. 2003)

Can't find where the group is from - but I'd hope Spanish doctors might take it seriously!

Thank you, Eileen, I will tell someone.. I need to be taken seriously by someone soon, someone at the hospital I know that I ran into, a fellow Neuro of my husband's was surprised at our choice of rheumi, implying that the guy had developed a personality disorder! Hopefully it's was one of her jokes but it made sense to me! Since I have had nothing but arguments with my husband since my symptoms started ( he is very afraid of cortison) I am still going forward with the emancipation.. Lol.. I need to find out from someone objective why I was feeling so well on 10mgs for one day and now I'm back to square one .

Interesting - but I bet a woman sees different aspects of a character... I think a lot of rheumies have a personailty disorder - was discussing their foibles with OH yesterday!

I know - some doctors are totally scared of pred and I suppose he must see it being used in some pretty hopeless cases so there is also a feeling for him that he doesn't want you to take this horrid drug that doesn't cure anything. What is he really afraid you have I wonder?

My husband had been a Neurologist for 45 years, he has been the head of department and is known all over this huge hospital as having an unusually keen clinical eye. He has excelkent bed side manner with his patients but when it comes to me, he is irrational and imposdible to communicate with,. My laziness is to blame as it was really convenient to have instant access to specialists for myself and my 5 children. Now I'm paying the price!

I consider I've been put under enough risk having maintained Elevated CRP and very deficient in vitamin D for a few years now. He is making me feel like I want to take the prednisone to obtain a high or something.. Hahaha ha... I wish there was a way to ride PMR naturally!! It would be perfect if he could work with me and start me on an optimal dosis of prednisone and taper slowly once my symptoms subside... Oh well, I'll figure it out.. For now I'm firing this rheumatologist who, instead of giving me special attention. had sent me home for a while month with a prescription of 10mgs for a week and then ask of a sudden from to 5mg. Perplexing. and frustrating.

"I wish there was a way to ride PMR naturally!!" - well I suppose there is, you put up with the pain! I had that joy for 5 years and I really wouldn't recommend it!

Strange isn't it - a GP/physician friend who worked alongside my husband once told us how wonderful he was with patients. I and the girls just fell about laughing! Empathy and he can't meet in the same sentence! But eventually I worked it out - they just haven't a clue what to do when their spouse on whom they rely isn't 100%. They are in a total funk. Every tme I've needed/wanted him to be there and give me a cuddle or support he just stands there and does nothing. When I broke my leg skiing it took our cousin to tell him what to do. I coped with 2 problem pregnancies and pre-term babies, one of whom was pretty sick and the other was healthy but tiny (1090g) and the German baby unit had never had to deal with that before. I had to educate them that of course she could breast feed! Both went home after 6 to 8 weeks fully breast-fed - an achievement I'm pretty proud of.

You are doing well at 10mg aren't you? If it stays that way I don't think your husband can hope for more - it really would be a nicely low starting dose and once you are stable you can wriggle down 1/2mg at a time.

Sorry Eileen, I was doing Tammy well yesterday but I'm back at square one today, feeling. sick. I will try to. take 10mgs at 2 am like to divested but I think my body is screaming for a higher disks. My husband says he is starting me tomorrow on 12.5 MG which is the lowest recommended dose and I am a big boned, tall person. I have the feeling that I have GCA although the symptoms are very subtle and diffuse yet, perhaps I need the higher dose. required for GCA but my husband doesn't even want to consider it.. At least my eye was OK.. just age - related but was told to be vigilant and go back as soon as I had any change in vision. Hopefully the 12.5 MG will do the trick but it's going to be literally an uphill battle instead of a downhill one like everyone else... Hahaha

I just thought of something.. Could it be that I overdid. It yesterday and as you warned me, the feeling I have today is due to that, instead of the low dose? Sorry to be such a bother.. Still amazed at the usefulness of this site!

Fingers crossed then - the mind boggles what he'll do if it does turn out to be GCA so we'll be positive and hope it isn't.

It could be - so the answer to that is to REST!!!!!!! Be a poorly person for a few days and see if that gives your body a chance to recover a bit.

No bother - I'm sitting at the computer finishing my wine before my 10pm bedtime   I'm a creature of habit!

I must get myself disciplined after becoming a chaotic insomniac due to this bothersome condition..

you are so right about men in general being very poor caretakers, and it seems some men lose their empathy when their brain cells start to die in the frontal lobe.. 😱

What brain cells? 

 To funny, Oh I digress, found many a Dr's with horrible beside manners, unless you nod and smile...actually had a argument with a spealist once. Such a horrible ego. Reported him and three months later he was gone. Oh I read the comment about my Neuro having the liberty of being gone. I am hesitant really about the whole department, but she actually listened to me and that was refreashing for once. Obsolutely don't hesitate getting seen if you have vision problems. 

After my three days of pain I am a cronic insommiac. Today the grandkids poped in, I think by the time they left my eyes were rolling in oppisite direction. 

I tried a time-release melatonin last night and slept like a baby. I'm wondering what are the mandatory medication one must take to combat the side effects of Prednisone. I was prescribed something to avoid being an ulcer, not sure how to call it in English, Pantecta is one version in Spain, they have a lot of side effects themselves and I'd like to know if it's really necessary. I did have "heartburn" yesterday but I'm thinking that if I make sure to take the prednisone with food (will be challenging at 2 am) maybe I could this medication.

Also, the medication for bone protection, does it depend on the individual's bone condition, or is vitamin D3 enough? I think my diet has plenty of Calcium but I guess I wouldn't. mind taking a supplement if they insist. It woyld like to try and keep the chemicals to the minimum. I've found that doctors are brain washed by the pharmaceuticals and try and push unnecessary meds on patients. I was told I needed to go on statins once. I took one pill and woke up feeling like I was under a truck that had ran over me. I refused to take them and started research on cholesterol that led me to discover I had a severe vitamin D deficiency which causes symptoms very similar to PMR as well as raised LDL and autoimmune disease. Something so simple, cheap and important to correct and yet in my case the docs weber trying to push completely unnecessary, expensive statins on me..

I'm so grateful for this group, it's such aninvaluable tool these days worth all the cut backs in health service, governments should encourage patients to participate in sites like these as they works be very cost effective. The NHS, I believe has started such a campaign. In Spain still, doctors grown upon patients who come in to their office informed about their condition..

It's a PPI (proton pump inhibitor) which inhibits the "pump" that produces acid in the stomach. Yes, they can cause horrid side effects though omeprazole is probably the worst and others are slightly better. I've never taken them other that for about a week in hospital and when I discovered it wasn't covered by healthcare and I'd have to pay for it I stopped pdq!!! I'd had enteric coated pills in the UK which don't need anything but I didn't really have any problems even with ordinary tablets and now I am on Lodotra which are also timed release (you take them at 10pm and they release during the night). Lots of people have managed fine without - one cohort swears by yoghurt, particularly bio with added cultures. In Spain you eat in the middle of the night - take your pred then!

Interesting you mention the statin - they did the same to me, I already had PMR but again the hospital decided I needed something I didn't (I have atrial fibrillation, not a history of cardiovascular events) and the cardiologist was fine about me not trying another. But some statins have a record of triggering PMR - it's on their data sheet. I thought I was dying after a week at half dose. It took months to recover.

There's nothing mandatory - calcium and vit D supplements are advised for everyone (I use Natecal D3, 600mg calcium and 400 IU vit D3, twice daily) and so is a baseline dexascan. IF that shows a need, then bisphosphonates are considered. I took a whole 4 tablets (1 a week) before doing my research and stopping them - with the blessing of my GP. They have nasty side effects too, especially longer term, so I believe in keeping them for when they will be needed. My bone density didn't change in the first 4 years - not sure about the last 3, need another scan. There is a post on another thread where the lady had increased her bone density - just with calcium and vitD, You need extra calcium because pred tends to flush calcium and magnesium out in the urine - having more around helps avoid the bone density loss that can result (shown in a study).

Funny - here in northern German-speaking Italy they are very open about complementary approaches and my doctors are VERY open about the informed patient. That may of course be because the average patient knows NOTHING! And most people (non-Italians I hasten to add) will do all they can to avoid going to the doctor! Italians? That's another story!!!!!

Wow, Eileen, thank you so much for all this useful input. I have learned a lot about this mysterious condition from you and others on this site. Just a few days ago, I thought that once your symptoms are gone immediately upon taking prednisone, you were all set and could go about your life as before.. Haha.

I came to an agreement with my husband, to work together to manage the prednisone. ( I figured, mind as well take advantage of him 😈, he has started me on 15mg and I feel great today although now I know that if I over - do it, I will suffer tomorrow.

I was wondering about something else. Is it possible to not gain weight while on prednisone? I gained 25kg. in one year after menopause and the pituitary aploplexy, which leaves 80% of patients with at least a growth hormone deficiency. I never bothered getting the stimulation test for GH because it has its risks and I doubt under the public health system here, that they would approve GH replacement for me. I think the huge weight gain was due to vitamin D and a GH deficiency IMO (I was Zero on both).

Since May, I have lost 15kg due to anorexia caused be PMR, one symptom I will miss! I am already noticing that I have gone from anorexic to having a ferocious appetite from the predisone. I eat healthy, try to do intermittent fasting by eating only during a window if 8 or 9 hours and sticking to a keto diet. When I lost my appetite, I couldn't eat meat or fish (maybe because I was raised a vegan) while I had the PMR symptoms and as meat causes inflammation, I've decided not to re-incorporate it into my diet. But do you think you can avoid gaining weight on prednisone if you are careful?

BTW, Eileen, Spaniards have the worst English language level in Europe if not the world. The president nor the opposition leader speak a word of English in this day and age, and that limits one's ability to stay abreast of almost everything as most of the info on Internet is in English. The Italians are much better speakers of English! They are working hard on catching up with the rest of the world though, most schools now, even the state ones, are denominated "bilingual" these days.

I didn't gain weight on pred.  At the very beginning I did two things: started walking more than I already did, and tweaked my already healthy diet by cutting out almost all wheat, all refined carbs and foods with added sugar.  Fortunately I long ago outgrew my childhood sweet tooth so it wasn't hard for me.  I also had the incentives of 1) potential osteoporosis and 2) sharply increased blood sugar level.  I did not starve myself and to this day I eat lots of nuts and other fairly high fat foods.  For example instead of cereal for breakfast I eat pumpkin seeds, eggs fried in healthy fat, and a high Vitamin C fruit.  I've always needed mid morning and mid afternoon snacks and now I also have a small bedtime snack to help the bedtime calcium dose on its way.  I think one secret is not to allow oneself to get too hungry.

Thank you, Anhaga, I, too, have a similar dish, I eat no grains or simple carbs.. Mostly veggies, fruit, eggs and raw cheese and nuts and seeds. I was worried that maybe the cortisone spontaneously made one gain weight, no matter what type of regimen one has!, You have made me very happy. 😊. If what I thought were true, I would have no motivation to Implement ways to curb my appetite or avoid over- eating...

Oh dear - there I was hoping to have a holiday in Spain next early spring - and we don't do Spanish beyond hola, vino and paella... Don't even know what beer is offhand - not that I care, that's for OH! 

Right - quite a few have avoided weight gain altogether while on pred and some of us have lost weight while still on pred. I lost 17kg originally but have put about 5kg back on this summer. Part I did by being switched from Medrol to Lodotra. I put weight on with PMR because of immobility, it rearranged itself to the usual places but I didn't put on any more. Then I was switched to Medrol - massive weight gain in 5 months. Later I was switched to Lodotra and the midriff fat melted away - I encouraged it by almost no carbs. If I eat more than absolute minimum carbs I don't lose weight, too much and I put it back on. You're already doing that so can't add to that. Omitting meat makes it more difficult though. I'm really not entirely convinced about the meat causes inflammation bit - keep it to a low level as I do and it doesn't seem to make any difference. Lots of oily fish though if you can stomach it - MrsO swears by it, as well as turmeric and ginger. Anhaga has given you good advice too

Does your husband speak/read English? There are a load of reading links here:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

there are useful articles on the PMRGCAUK northeast site - some aimed at doctors, their DVD is good for healthcare professionals to learn about what pMR does to us, with healthcare professionals presenting the patient's side 

and there is an Oxford Rheumatology Library pocketbook called Polymyalgia Rheumatica and Giant Cell Arteritis, Edited by Bhaskar Dasgupta and Christian Dejaco

which will give your husband a good background - there are bits I don't agree with purely from personal experience but I'd argue my point with either of them! Dejaco is actually a near neighbour of mine but works in Graz in Austria - the region is hoping to persuade him to come here! Hope so - haven't met him yet.

Hum - have I covered everything?

A calorie is a calorie, and many of us have found that with reduction in pain we can exercise a bit more, and that compensates for any potential changes in the way the body processes calorific foods.  Without my 10,000 steps a day, more or less, I would definitely have gained weight, probably at the rate of about a pound a week!  And on that note, I'm heading out now for a walk in chilly, windy, October sunshine

We've had a beautiful day today compared to yesterday and we went out for a walk in warm (15C) sunshine with no wind - and that makes such a difference! Even OH came with me - he doesn't do bad weather walks unfortunately. Not that i would have gone for a walk yesterday - not without wellies and a sou'wester...

Way more than I expected.. Thank you.

Don't worry about your holiday..lots of immigrants who all speak English 😂 so you can say "beer" instead of "cerveza" or "caña" which is an 8 ounce glass of beer, the mind I like. . I have a new daughter in law that is from very near you, I think.. Lugano. She is a polylot but doesn't. speak Spanish.. But my husband does speak English, he did some post graduate work in the US and Canada, so I will pass on the links you sent.. They sound very interesting . I need all the help I can get in order to obtain the necessary support to do the tapering method on here and the general guidlines that seem to be used for treatment of PMR /GCA. I'll just pull out these posts as ammunition. I do need to find a GP and a rheumatologist as my husband is retiring next month. He will still be able to prescribe but he won't be able to get me frequent blood tests, etc.. that I will need.

I'm very happy to hear that it's possible to not gain weight, even lose some. 👏👏

My walk was great!  The sun is still strong enough to chase the chill away. 🌞

I decided OH would have to have pintas - that's easier to proounce!

No, Lugano is the other side of Italy, on the Swiss border whereas I live just about north of Venice. Equally beautiful but different.

Blood tests are only really that essential every 3 to 6 months - more often is only worth it for the PMR bit if your ESR and CRP reflect your symptoms. Symptoms are ALWAYS king there. You should have the general stuff done - especially calcium, urea and electrolytes and Hba!c to keep an eye out for steroid induced diabetes but they don't need to be done monthly by any means.

That's what I like about the sun 

I didn't realize that German was spoken in that part of Italy. Interesting.

I had a really bad night, I slept but woke up frequently to urinate, everyone I woke up, I felt like I had Ebola, sweats, chills, paralyzing pain in my whole body and a headache. Yesterday I had taken 15mg and felt OK during the day, though I rested most of the day. Around 8 pm I suddenly felt very drowsy and tired and went to bed around 10. I was moaning all night and every time I had the urge to urinate(6 or 7 times), I felt so ill that it took me seer several minutes to venture out of bed. I didn't feel stiff, just pain.

I'm really confused. I think maybe the frequent urination is die to the side effects but crashing like I did last night, could that be that 15mg is not enough to start out? I tried telling my husband that I'm a bigger person than most Spaniards (I'm 3/4 Northern European) but he says steroids are not administered according to body weight. It's not what I read. From what I have understood by reading all the posts on here, the trick to combat PMR/GCA is to start on a dose that renders one symptom free and then after 4 weeks of no symptoms to start tapering very slowly so as to not shock your adrenal glands. I feel like maybe I'm taking the risks of taking steroids without getting the benefits, or ignoring symptoms of GCA as no one seems to take me seriously about my headaches and tingling sensation in my scalp. Should I maybe try to get a doppler or sonogram to rule it out? Maybe I'm just being paranoid?

Until the end of WW1 it belonged to the Austro-Hungarian Empire but at Versailles it was handed over to the Italians as a reward for their help.The German heritage is alive and well - and they were still chucking bombs at electric pylons in the mid-70s!

Pred isn't dosed by weight usually - but if he reads some of the documentation he will see that the dose is sometimes quoted as a dose in mg/kg body weight.In the 2010 BSR and BHPR GCA Guidelines, for example, they say not less than 0.75mg/kg body weight. That is GCA though.

There is a paper from an Italian group:

"The correct prednisone starting dose in polymyalgia rheumatica is related to body weight but not to disease severity.  Marco A Cimmino"

and their conclusion was "12.5 mg prednisone is a sufficient starting dose in ¾ of PMR patients. The main factor driving response to prednisone in PMR was weight, a finding that could help in the clinical care of PMR patients and in designing prospective studies of treatment." - 12.5mg worked for smaller women, it didn't for larger men. The 12.5mg worked for 75% - within a month. Depends if you want to wait that long I suppose. 

Remind your husband that the bioavailability of pred varies from 50% to 90% - that means that some people only absorb about half of the pred, others nearly all. That is a factor and must be borne in mind.

Don't expect to be entirely symptom-free - 70% improvement is what is looked for fairly quickly if you are a high enough dose, more improvement may take much longer. The bursitis I had took a few months to go.

Lots of people find pred makes them pee at night. Is there any chance it could have been something else? Most of the pred would have been out of your body by then.  I have to say, I am a bit worried about your headaches and tingling scalp - won't ANYONE listen? Unfortunately, the chances of finding a doctor who can do the U/S for the halo effect on the artery is possibly small - unless Madrid was a centre for the TABUL study. Then there should be someone who was trained to do it. Maybe the nice lady rheumy can tell you?

The sudden "I've hit a brick wall" does happen quite a bit in the early days - and I'd expect it to be worse with GCA than with PMR - and believe me, it can be bad enough with PMR! Give it a day or two - but if you get any visual symptoms, no messing about, that must be taken seriously and quickly.

Thank you, Eileen, I cannot express how grateful I am for your response . It answered every question I had, beyond any expectation. Your information is so clear that even a Spanish doctor will be convinced!

Forgot to say, I will take your advice and give it a few days. I lost it today, after I walked two blocks to a restaurant and found that my leg muscles were giving way. I had a tantrum which has now subsided, upon reading your post. 😇

Oh.. and will ask about the test for GCA.. They are pretty advanced technology wise, here, it's a lot of the older doctors that never evolved from their insular state... It's a linguistic and cultural thing. "Spain is different", as that slogan said.

Just want to post an update. I've calmed down after a melt down I had yesterday, giving 15mgs a few days to see if I need more. Meanwhile , I've decided to take 10mgs in the am and 5mg in the pm. It seems that I haven't "crashed" crashed today. The melatonin doesn't seem to work anymore, I couldnt sleep till 6 am. I feel sleepy at times during the day but I can't really sleep. As I don't work, it's not too big of a problem. I don't feel 70% improvement, but for the first time today, I feel like I will get there soon, maybe after adjusting the dosis. I don't feel like I'm in any inminente danger of losing my eye sight so I have decided to just wait and see, hopefully the GCA symptoms I feel, but that have improved somewhat today, were just paranoia, and I am on the right track for PMR.

Yep, Eileen, your input has convinced my husband that at least we need to find the right dosis to start with and that that could mean upping to 20mg.

Oohh - you have a lovely husband! I like doctors who are willing to learn - oh that there were more of them! And you say he's retiring! What a waste of experience.

But you sound to be learning too - it's horrid at the start, you feel high on pred, can't sleep but can't do anything or rest either. It honestly does get better.

An internet (and now real) PMR friend was in Madrid the last few days. Shame you couldn't have met - you would have learnt so much from her. She's on her second batch of PMR - and says she feels totally different about pred this time round. Less paranoid about reducing the dose, less worried about what it will/can do. 

If things are improving, albeit slightly slower than you would like, that is all good.

Hugs

Thanks again, will keep posting my progress. If you ever come to Spain for that holiday....we can have a cerveza 🍻

That will be lovely - I have met up with internet friends this summer in Canada and the UK. We had so much fun!