Had PMR for over 7 years and been on pred all that time. Increased for flares then decrease. Longest time on small maintenance dose was over 2 years then flare and back up again. Never able to get off completely
Had 1st TKR July 2016 and initially all good, then 3 major flares within short time post op. Hadn't been given any IV hydrocortisone peri operatively, and with the increase in oral pred over last year am a 'butterball' again. (at least wrinkles on face filled out!)
My ortho. surgeon wants to do other knee (as bone on bone and I have to use crutches or rollator to mobilise... all this very quickly happened within last few months)
Rheumy said prefer to wait till pred. down to under 5mg but at 9mg now (was back up to 25mg) but said should be ok. I am 70, been fairly active and retired 3 years ago and was expecting to have 'travel retirement'...lol
My dilemma being, I have put on 14kg in last year and not looking like losing anytime soon, as unable to walk more than few metres at a time (been going to pool and walking) Ortho thinks not worry about weight gain, as a vicious circle of trying lose weight but not being able exercise, therefore have knee replacement and (hopefully) be able to mobilise more freely and weight loss follows? Rheumy thinks maybe better to wait till March next year until down to lower dose pred. I thought I was prepared to have op in October, but now unsure...... I feel 'flat' and would be grateful for any suggestions or advice from you, I felt like I was going forward last year then a giant cricket bat whacked me back down!
Thanks to all who post and share their concerns/advice/encouragement on this site... x
ps my son is more pragmatic.... said should have done sooner than later, as 'who knows what going to happen later'......... oooooooh
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AussiePolyDee
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I have had PMR for 2.5 years and hip pain for most of that time. Also flaring around the 10mg point. However I had a hip replacement in November when I was at 7.5 mg. I was so relieved to have it done, no more awful pain, walking sticks etc.
I remained at that Pred level for about six weeks. Since then I have reduced slowly and now at 1.5mg. From my point of view it has been a great success but I appreciate that knee surgery takes a little longer to get over. I still can't seem to get rid of the weight I put on but my walking is quite good now and I'm older than you! I am also caring for my husband although he is in hospital just now but that means even more walking along the hospital corridors!
Perhaps you could discuss the Pred level and what they do about that at the time of surgery with the surgeon. I actually found that the anaesthetist knew much more about Pred than the surgeon although I was extremely happy with the surgery.
Maybe the thought of seeing more of the world will help in your decision. I'm certainly glad we travelled when we first retired as holidays for us now are in the dim and distant future with my husbands current health.
Thank you so much for your reply. I think I would be better having the knee replacement earlier rather than wait till next year. Bit of a Miss Misery B#m at the moment, which isn't very attractive! I will be seeing rheumy again in 8 weeks as he was going to discuss with orthopod. I really look forward to being able to 'walk' without the rollator/crutches, as its my knee that's the prob at the moment. Kind regards, Dee
I really have no information that would be helpful. Just wanted to say that I'd feel as flat and stuck as you say you are feeling right now.
I do have a few thoughts/questions. I'm probably just betraying lots of ignorance about how all this works but here goes:
Why does your rheumy want you to be on a lower dose of Pred before you have the operation? Is it because of concern about your immune system being significantly more compromised at 9 than at 5? Would he not have to be giving you extra Pred. to prevent post op flairs in any case? Does it make a difference if he's upping you from 9 or from 5?
If I understood you correctly, the last knee was done when you were on a low dose of Pred and you flared after the operation. You are on a higher dose now. That means, perhaps, a more compromised immune system I suppose, but maybe having more Pred on board might mean less post op inflammation and pain?
Also, down at 5mg, you'd be calling on your own adrenals more to give you the energy you will need to do the rehab. . How well did they kick back in the last time you had tapered down below the magic native cortisol threshold?
I don't know, but I'd want answers to some of these issues to help me decide.
In the meantime, I would suggest, if you haven't already, do try to cut way back on carbs and sugar. It might really help the weight issue. No guarantees of course, but I found it remarkably effective. I told myself that all I needed to do was get through three weeks. If at the end of that time, nothing was helping, I'd go back to my old ways, bread lover that I am....It wasn't anywhere near as difficult as I thought. Desperation helped!!! I was at the top of my all time weight and just starting Pred and the thought of adding yet another 25 pounds was not a pretty picture. But the weight came off and the cravings weren't bad as long as I didn't cheat much.
Please let us know what you decide and what determines that decision. We are all subject to these issues. Good Luck.
Hi, thanks for taking time to reply. I think Rheumy concerned as (like many others) I have 'amassed' several auto immune diseases over last few years, and throw in a bit of heart probs. go with it, but he did say he was going to contact orthopaedic surgeon and discuss, said might be a compromise and do sooner. I'm a bit of a sook and like my little pooch, tend to go into corner and isolate!
The dreaded carbs... yes, I do need curb those, even though I have tried to stick to 'good' sensible foods, I think the almost complete lack of mobility has made me more flat and (dare I say....apathetic!) Sometimes I just don't want to go out and even do grocery shopping online! Not depressed, just have the usual tiredness and flat feelings that others have, and do seem to have days about. More the rheumatoid arthritis and osteo pain which would I think be improved if had knee done sooner.
Thank you so much for your best wishes, I am very happy that I found this site earlier, as doesn't seem to be same support here (or I haven't found it yet) in Sydney.
I had my hip replaced 7 weeks ago while on 20mg pred. They had been putting it off but as the hip got so bad it had to be done. I asked if I should try to lower the pred leading up to the operation but the surgeon said to leave it as it was and he would give me more at the time of the operation. My knees are terrible but my hip is wonderful. My knees were flaring I think even before the operation and they still are. I think I would get your operation done earlier if I were you.
Hi, thanks for your advice, I will see orthopod. after see rheumatologist again in beginning October and hope can be booked in before November. Glad to hear your hip replacement has worked out well, and hope your knees are improving a bit. Kind regards, Dee
I think my knees have been worse today but I had to go to physiotherapy for my hip and she suggested some exercises she thought could help my knees, so I will try them.
Hi again, Think that's a good idea to go to physio. I've just been trying to do the post Knee Replacement exercises myself (from last year) but think I need some physio get me back on track before I 'bite the bullet' and have the other knee 'done'. Let me know how you're doing with the knee exercises..... hearing about successes (even small ones) makes me DO something myself instead of being a butter-ball of apathy!! Regards. x
I have just been to dietician and she has 'sorted' me out with higher protein lower carb foods... Thought I could do myself, but did need some 'professional' help (more ways than one!) with Coeliac, the bread/grains higher carbs. and she pointed out that I don't need those, (have to remember want and need two different things!) I will have my knee done as soon as I can get clearance in beginning of October and hopefully will be a couple of kilos lighter too. Kind Regards, Dee
Ha Ha Ha! Just had to fast for some blood tests so thought this might give me a bit of a 'boost' to carb. cutting (lol)! Fingers crossed. Babysitting my 19 month old granddaughter tonight so shouldn't have too much time to think of food! I find my thoughts go to food all the time, can I blame the pred.?? (don't think so either!)
In my experience of 'diets' is they inevitably make you think more about what your can't have. However I have also found the longer you do without the less it feels like 'need'.
I have been total carb head ...bread pasta...bread pasta. I cut bread out by stealth. Then one day I found a couple of slices of wire bread in freezer and decided to have for bfast...result was terrible heartburn for hours. That helps me not but anymore in!
I understand now that my night time munchies were often stress related or more like DL etc say..i hadn't had a satisfying meal for my body to process. Or my sleeping pills caused eating in sleep during night. 😉
HaHaHa! I think my alter ego must be getting up at night, hobbling to the fridge and clearing it out! Having a minor op tomorrow on my cheek (face cheek that is!), so hopefully with several sutures in, I may not be able to eat! (note the 'may not' I definitely will 'want' to .......) Down to 8 mg pred. now after major flare last year, cant blame the pred. though as been on for 7 years now, and did manage to lose weight for sons wedding 4 years ago.... I think I need hypnotherapy to curb carb. indulgence.. hopefully once I get my 2nd knee TKR, will be more mobile and the activity may at least equal what I eat... Thanks for sharing xDee
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