Flu jab

I have not posted for a while, not been feeling too good. I have been gradually reducing the preds. I am finally down to 5 mg a day, I was on 60 mg last December. The withdrawal has been a nightmare of side effects, pain, depression and work, just kept going with the aim to get of the steroids.

My dr has now referred me for a knee replacement, which is great. Originally wouldn't until I was 70. I am 61 and was very healthy and active until diagnosed with both Gca and PMR dec 2014

Rheumy says the Gca has burnt itself out from the results of the biopsy

I have also seen an eye specialist and the pressure was really high in both eyes, I now have eye drops that seem to be helping

They don't feel like they are going to burst all the time now.

Now 2 days on 5 mg and just feeling tired and a bit head achey not too bad though. Next drop will be in 1 mg at monthly intervals so hopefully be off the preds in 5 months. Can't wait to get off them. All my blood tests are coming back normal which is great.

The Drs surgery has contacted me for my flu jab, does anyone know if this is likely to affect anything to do with Gca or PMR as I would prefer to know before I get it done, I have asbestosis as well, so flu is a serious issue for me, last time I got flu I ended up in hospital with pleurisy.

Anyone got any ideas on when I should start loosing some weight my dr has given me a diuretic but not seeing much change so far

13 Replies

  • To get from 60 in December to 5mg now is amazingly fast and no wonder you have felt rough! I do hope this continues and you are able to get off pred.

    I'm a bit confused by the rheumy claiming the GCA is burned out on the basis of the biopsy. The biopsy is usually done at the beginning and even then a negative result does not mean you don't have GCA, it is just a confirmation for future reference.

    Your doctor is wrong about not referring you for a knee replacement until 70. There are no age limits - if it is needed it is needed and they prefer to work on a young and relatively fit person than leave it until the person had been unable to walk for a long time which makes the recovery difficult. Many GP s think this - it happened to someone else I know and we told her to seek another opinion.

    I have had my flu jab for the last 3 years with PMR and on pred with no bad effects. My husband missed his 2 years ago and ended up with pneumonia - so he won't be doing that again!

    A diuretic only gets rid of excess fluid - the weight gain with pred is mostly fat - it changes the way we process carbohydrates and leads to extra storage of fat. Some people don't lose weight until after they are off pred altogether but I have lost 19kg by cutting carbohydrates in my diet though it has been hard work! But it is slow but sure providing I don't eat carbs!I know others who have lost weight with Weight Watchers - it is all about cutting our portion sizes and being disciplined.

  • Thank you for replying so quick, yes I know I have come down from 60 to 5 really quickly I got really stuck at 35 and again at 15 mg suffered really bad side effects. But just wanted to get off them

    I know the last 5 I have to be very slow with.

    The rheumy actually said the biopsy showed signs of Gca having burnt itself out, this surprised me as well as I understood a biopsy would not show any sign of Gca if you were taking steroids I did query it and she said if I can get off the steroids without activating the Gca again I would get better

    In regards to the knee replacement I did argue the point with her and she said if I got down to 20 mg preds she would refer me and I would prefer the decent knee in my 60's to having it in my 70's

    I have been on a diet for the last two weeks and still not loosing any weight, never had a weight problem until steroids

    Would it be more realistic to wait until I am off the preds or is it possible to loose weight on the 5 mg dose of steroids a day

    Still have the moon face and humped back when do they go?

    I will get my flu jab as normal

    any advice gratefully received

  • I have lost 19kg in the last 3 years - while still on pred. The weight loss started at 15mg and I'm now on 5mg. I cut carbohydrates drastically and also used the 5:2 diet idea and have been very disciplined. It can be done. It isn't easy and if you cheat you don't lose weight when you are on pred!

  • Hi lilymaerose. I had a biopsy in June about three weeks after being put on 40mgs for GCA. My concern was that the steroid would have dealt with any giant cells by that time so what's the point. It was explained that even if the giant cells had gone there would be some signs of inflammation or scarring in the arteries affected so diagnosis could still be made. They also told me there was only a 50% chance they would find anything even if I had it, as it may not be in the arteries they took the biopsies from, no one can tell which arteries its growing in as it will affect everyone differently. The procedure is only useful if it comes back positive as there are too many false negatives. I think the low carb diet is a good idea it worked for me at 15mgs for PMR I didn't put on any weight but have the same problems as you at the higher rate. Am now on 35mgs and will come down another 5mgs in next two wks til I hit 20mgs then 1mg per month. All the very best. Hope you have a fabulous day cc 🌻🌻🌻

  • I have not had a Flu shot in over 15 years and will never ever get another one. You should look at the ingredients, Mercury and Formaldehyde for 2. Are you kidding me?, Formaldehyde is used in embalming fluid. The flu shot cannot possibly protect you from all the strains out there that mutate very rapidly. Do what ever you want but for me no flu shot

  • The flu shot and embalming fluid are not exactly the same thing. It is a preservative - in both cases. There are people who would get far worse if they caught flu. My husband forgot his shot a couple of years ago and spent 6 months suffering from the effects of the pneumonia that he developed because of the flu I didn't catch.

  • There is a shot for pneumonia which my husband got. Before that he always had pneumonia in the spring during allergy season, and sometimes another bout at another time of year. Since the vaccination, no pneumonia. I'd say it is more effective for people susceptible to pneumonia than the flu shot is against flu!

  • That is because the pneumonia doesn't mutate and change its coat! The pneumonia shot is now for life. Flu mutates which makes the job far harder but there is hope that they can make the flu shot identify a different bit of the virus, the bit that doesn't mutate, and then they should be able to make a far more general shot. Whether it could be a lifetime shot remains to be seen.

  • Hi Carrollee

    3rd day at 5 mg and touch wood, still not feeling too bad so thank you I am having a good day

    And to PMR pro

    I don't think any thing about this illness or treatment is easy, it has been sheer determination that has kept me going this last year and it will keep me going through getting off the steroids and loosing the weight and getting my life back.

  • I was diagnosed with GCA and PMR in July of 2014. I was immediately put on 80 mg prednisone a day. I reduced it quite quickly at first, although I didn't ever get below 10 mg of Predisone. All the way through the reductions I had relapses. Upon the advice I received from this site I went back up to 20 mg. Since then I have reduced very slowly and had no relapses. I am now down to 9 mg. per day. My weight has only just started to drop. I walk 5 to 8 miles a day, lift weights again and do other exercises. . I have always been a very small eater., and now I eat hardly any carbs. The weight loss is slow. Thankfully my moon face has gone, but am having problems with losing the stomach fat. I can honestly say that I feel great, better than I have in years, maybe this thing was brewing for a while.! I did have my flu shot in October of last year along with a pneumonia shot. Neither of them affected me. I hope that you soon feel better, but please go slowly on the pred reduction.

  • I can totally relate to what you're going through. This is my second go around with PMR - I had just got my life back and my weight was back to normal. Now I'm 15 lbs overweight - right around my middle. Have been watching my diet - do this on a regular basis anyway - but I still keep packing the lbs. on. Down to 7.5 mg. from 10 mg in April and hoping to get off pred. before the end of the year. I'm active - golf, swimming and walking - but it is a battle and frustrating. It is sheer determination but it is worth it in the end. This site is great and I have learned so much. I have passed on a lot of info to people here in Canada who are struggling and have no access to info. Just got Kate Gilbert's "Survival Guide" and I'm passing it on to my doctor to read. Keep the info coming - all of you out there are our lifelines.

  • Hello Lilymaerosa - I can only offer what has worked for me - I have GCA (May 4th this year) and none of the medics mentioned this Pseudo Cushing's; so I was shocked when all this fat/swelling appeared. By the time I was down to 20 mg I could only get two pairs of outdoor boots/shoes on and then only zip them up halfway (they are ankle boots !). Buffalo Hump, fat/baby hairy face etc. By early August I was also looking 5 months pregnant, despite taking great care with my diet due to Steroids having this reputation of increasing your weight. My Daughter told me of the PALEO DIET - really not so much a diet as a different way of eating. She had mentioned in back in May but I hadn't taken any notice I started the diet on 10th August and by 21st had lost 6 kilos. OK mainly water and fat to start with - but that's what I wanted rid of. My boots/shoes fit again and all other swellings have reduced by about 70%.

    I don't find it any easier to diet that anyone else, but this 'diet' is really easy - as it's just full of what we should be eating, and not the manufactured junk we are sold. I won't bore you with the details (many) as it's all there on-line. A major plus is that there are many 'case history' stories of people being 'cured' of (amongst other things) auto immune diseases. We personally know one. The mantra is - If Man made it don't eat it.

    If you do it properly it will start to work very quickly.

    Hope this helps.

  • Thank you all for your input I will look up the Paleo diet on the Internet, glad you understand, the weight is a big issue for me at only 5ft 3, four and a half stone over weight is serious as I have chronic arthritis in both knees and makes it so hard to walk

    Went to the shops with my hubby today and walked with my cane instead of wheel chair, really painful but big sense of freedom as well. First time I have been able to do this in 3 months

    Pre Gca & PMR I used to weight train 3 times a week with my hubby who is ex forces and run and work a 24/7 business and also know how to control my diet, we mainly eat organic, lots of protein and very few carbs but I don't seem to be getting anywhere with the weight, I also don't drink so no problem there either

    The moon face is still there. My dr says it takes everybody differently and once I get to 5 mg I should start seeing a change, so am waiting impatiently

    I still run the business but by directing it rather than doing it, so frustrating

    I look in the mirror and I don't even look like me let alone feel like me

    Anyway I appreciate all your support And hope my comments help you as much as yours help me. I have no doubt some or all of you are suffering the same


    I feel for all of you this is such a difficult illness to have, it has made me see lots of things differently since I was diagnosed. I am not normally the sort of person who uses chat rooms, i never do Facebook but this site has really been helpful to me. Thanks to everyone

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