After seeing my latest knee x-rays, my ortho surgeon has added my name to the waiting list to have a total knee replacement (sigh). We discussed my ongoing weight loss and he was very encouraged by my efforts thus far, and I'm more determined than ever to drop another 20 pounds (and do my daily quad strengthening exercises and stretches). I asked him if I needed to be on a certain dosage of pred and he replied no, and went on to describe the process of flushing hydrocortisone via IV.
The discouraging part of the appointment was he advised me the wait list in this area (Southwestern Ontario) is approximately 2 years!! When I booked my next appointment with the receptionist, she assured me is could very likely be a shorter wait time as they are trying to address the problem (which is more to do with transfer payments from the province, to hospitals, for surgeries). So I'll have plenty of time to "slim down" before the operation.
I've done a search on this site and have been keeping up with a few members in the same boat, but wondering if any other folks out there with PMR who have had a total knee replacement, are willing to share words of wisdom. My main concern is about the use of pred during surgery and the recovery process (will the dose need to go up, what about additional swelling and inflammation - will they prescribe NSAIDs, will surgery trigger a flare??).
I am most excited that I did not have to convince my surgeon to do the operation as I am 56, which I've been told by others is young for a tkr. He said it's not about age, rather about necessity, and some folks just need the intervention earlier.
Thanks in advance.
Leslie
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PMRCanada
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Hi Leslie, I had a hip op recently and just carried on taking pred as normal. I did have a flare after the op which I understand can happen and upped the dose. In fact I was not actually aware I had had a flare but the doctor said I had as my blood inflammation levels shot up and so I had to stay in hospital until they went down, really boring. I was offered Tramadol as a painkiller although initially I had morphine for a day. If you are taking steroids you should tell them they cannot be mixed with NSAIDs, if they do not know. It is a good idea to get as fit as possible before the op. Good luck with the losing weight.
Hi, my surgery wasn’t Orthopaedic but l had Hydrocortisone in Theatre & again during the night post operatively, they rang my Rheumatologist & she suggested increasing my Pred from 7.5mg to 10mg for 2weeks then return to 7.5mg which l did without issue.
Hi PMRcanada, I have not yet had my knees done, but did have a hip replacement in June. The NHS wouldn't do it, so had to pay but it meant I got it done quickly!
Regarding being on Pred. I was ( and usually am) on 11mgs. The anaesthetist had no problem in giving me an infusion of steroids over 24 hours straight after the op. I did not flare at all. Considering I can flare at the drop of a hat, I think this was very well handled. I was on a lot of painkillers the first day. I initially refused the NSAID but my surgeon explained it was only for a couple of days so I agreed. I slept so well !! Also regarding pain relief, I don't know how they do it in Canada, but most hip and knee replacements here are done now using an epidural and "waking" sedation, not a general anaesthetic. This means that there is absolute pain relief for a long time after the op. and you don't feel dopey at all.
I have recovered really well form this op. just really need to get the knees done now so I can walk again .
I know that there have been a lot of posts about Pred and the other adjustments in drugs that are required when having any form of surgery , looking those up might help as well as your discussion today , just in case someone forgets something.
I have noted a number of people saying that Pred needs to be increased just before surgery and for a period during recovery to try and prevent remission or a flare and taking extra precautions against infection is key because of the impact on the immune system that steroids can have.
But my surgeries have all been before having this issue so people like PMR Pro and others with knee replacements ( there are alot) will be better with figures.
A general word of advice I have for anyone having surgery , with or without PMR , is to boost those vitamins A , D, E, C and K and Zinc , Magnesium , Copper and Iodine for a few weeks before going in and during recovery as it will help speed up recovery and wound healing. Adding immunity boosting foods to your diet might help like good honey , ginger , garlic and turmeric and avoiding foods high in Omega 6 but increasing Omega 3 to help inflammation .
When I had my hysterectomy and gall bladder done , I made sure I did strengthening exercises for the muscle groups they would be working on so that they could recover more easily . For knees , my Auntie had a full knee and hip replacement and she did swimming and water aerobics three times a week , because she could do it even when her joints looked like potted plants and she could hardly stand. She made a full recovery , quicker than expected.
We both used Arnica cream for weeks before and in the surrounding are just after surgery to help reduce inflammation and bring out the bruising , and then a good zinc cream and cooling gel like Dermacool to bring down the heat in the area later . Gentle massage in the surrounding area and movement of the limb also helps with skin healing . When it becomes stable and dry Dermos do recommend a certain amount of time for wounds or skin lesions of any sort to be out in the air.
Keeping the wound dry and infection free is key . I will double check which waterproof dressings we bought but they were great you could shower without silly bags on you because they stuck water tight , but also allergy free and easy to get off. I'll PM you.
Don't know what hospital food is like in Canada but I always take in my own mineral water and have a cool bag of snacks , foods and frozen juices and good teabags that the OH refills on visits ( only reason for him to be there!,) I even take my own mug ( well those hospital drinks in the UK are really puny!)
And getting on your feet even just a little as soon as possible to stop the rot setting in and kicking off a flare will help.
Hope all goes well , of course if it takes two years you might be lucky and PMR free by then!!
Wow! Thanks so much for such a comprehensive response!! I will guard against infections leading up to the surgery. Of interest, when I read the op prep handbook it instructed patients to NOT shave their legs at least 6 weeks prior to surgery. And I’m not one for pharma pain killers....so, I’ll likely show up with furry legs and my THC disposable vape pen. I co time with deep water exercises 3 times a week, and I do daily stretches and quad strengthening exercises. My fit OH has taken it upon himself to be my personal trainer (sigh), in order to help me be in the best shape prior to surgery, but he has also started making homemade bread again (while I try to drop another 20 pounds).
The info about skin care is very much appreciated....I currently only use Cetophil moisturizer on my legs just when I think about it so they are certainly neglected.
I too will bring my own food/goodies and my daughter, a nutritionist will pump me full of vitamins/supplements in the weeks before the surgery.
Truth be told, I wish I could fly you out here to help with post op, but for now I’ll take in all your words of wisdom. Thanks so much!
Oh thank you , wish I could but I think my Doctors are a bit scared that I will go pop if I go on any transport speedier than a Penny Farthing at the moment.
Just had an EEG and the wouldn't even let me do the breathing section just in case something went wrong.
Would have thought that hospital would have been the place for that to happen if it needed to !
I did not have PMR when I had 2 TKRs but I was in my 50s, on about 15mg pred at the time. and had, as they say, comorbidities. I was in Los Angeles; neither the orthosurgeon nor my rheumatologist asked for a reduction, and I was given an increased amount of corticosteroid iv during surgery and orally for a few days afterwards. Now, I'm facing possible spinal surgery--another story. My biggest complaint is nobody addressed my back problems at the time, because of a narrow focus, and so my recovery was impeded. Hope this helps, even though not connected to PMR. By the way, knee pain stopped completely.
I have had PMR for 3&1/2 years. In 2018 I had two total hip replacements, one in May and the 2nd in October. In the last 2 weeks I have left the mobility aids behind. My physio said I need to relearn how to walk, as after 3 years of managing to waddle my technique was not correct. My PMR has not flared during these procedures. When I first saw surgeon I was on 9mg Pred. He wanted me on 5mg he said due to increased risk of infection. I managed to use DSNS to reduce to 5mg before op, and continued to reduce a month later and was on 3mg at time of second op. During surgeries on UK NHS, by spinal injection with sedation I was given IV Pred.
I found that my body did not like all the pain killers, blood thinners and my digestion was very upset. But those were worst symptoms. The relief from pain is instant and enormous.....just waiting for muscles to rebuild in strength so I can resume a “normal” life.
I so appreciate your response Valerie. Filled with lots of good info. I’m doing lots of exercises to prepare for the operation. I’m not one for pain killers (couldn’t take the Percocet longervthan the first few days after my hysterectomy), but have been told the pain meds help with doing (the viral) post op physio exercises. Being that marijuana is legal now in Canada, I wonder if they will let me bring a disposable THC vape pen in the hospital to help with nausea, pain and inflammation?? 😏
The receptionist mentioned Toronto has half the wait time. Only thing is I really like my surgeon, and don’t want to be in the hospital that is far from home due to eventual travel and family/friends being far away.😕 Thanks for the suggestion though!
Well waiting 2 years is not suggested. Can you have it done in the U.S.? I had bilateral TKR in May of 2015 in New York City by Dr Mark Figgee at HSS. Then 6 months later I developed PMR.
But I do know from my rheumatologist here in Florida that if you do need surgery they dose you before going into the operating room and after to “protect” you. Ask your GP about this and your surgeon. But waiting 2 years for a procedure is outrageous and if your pain in the knees gets worse can cause unnecessary stress. Perhaps because if your PMR diagnosis then can escalate your surgery??
Both my GP and Ortho surgeon are aware of my PMR status and knee issues. This does not impact the wait time. My Ortho did explain about the IV dosing of steroids due to being on pred and my adrenal system.
Going to the states to have the surgery is not an option due to the related expense. In my response to another member on here, I could go to another region here in Ontario but then will be far from my family/friends who are my supports, and would also mean a long distance drive home after the surgery. It is an option I may explore if my right knee continues to deteriorate at the current rate. Even though I still have full range of motion, and can walk on my knee, I am only able to walk shorter and shorter distances due to the pain (much like Melissa, another member awaiting the same surgery has described).
I can’t imagine what it was like to have both knees replaced at the same time?? Was recovery challenging? Sorry to hear you developed PMR afterwards.
I know it's hard to be away from your support group but if you could get it done alot quicker it may have a huge impact on the speed of your recovery from the operations , and PMR symptoms may also improve quicker , or relapse less.
I don't know the full cause of your need for replacement , but a mild warning from my Aunt's experience would be , with the first knee by the time she reached her place on the waiting list it had deteriorated in a way that meant the original operation wasn't appropriate then she had to go on another waiting list for a more severe operation and do it all again. Not wanting to fill you with dread but thought I would let you know.
It took 3 and a half years in the end for the first one. It ended up being done in a combined hip and knee job because the added strain from using the knee accelerated the hip issues.
Clearly , she was just unlucky , has these various family health issues in the mix , but the wait for my Uncle also increased the length of his recovery time after the operation with no other health issues . He had had his first knee done straight away under a company Health Scheme and was hobbling about happily in a week. He was retired by the next one and waited 18 months and it took months to be at the same pain free point.
She had the second one done privately instead and used some of her pension savings to get it out of the way.
Thanks for that info Bee. Neither my surgeon or his admin person discussed the impact of a 2 year wait would have on my knee replacement and recovery (my last visit was the first talk about total knee replacement at all, so I was adjusting to this new recommendation).
Going to Toronto here in Ontario would not cost more, rather it is the process of getting a referral to another Ortho surgeon that works out of one of the hospitals in that region (wait time for such an appt could be 6 months). Then they would have to review my history, agree to do a tkr, and then schedule the surgery (which could take another 6 months. The receptionist said it would be aporoximately half the wait time. The other issue is that I really quite like my surgeon, he is relatively young and up with the latest surgical techniques, he did a year of training at the Mayo clinic AND he is familiar with PMR. In top of that he has a wonderful bedside manner and is very positive and encouraging. Would I trade this all for a shorter wait time....I’m not sure.
I will be sure to discuss my current status and wait time, along with the impact of waiting on recovery when I see him in Feb for my next injection. He says that my knee deterioration is in between moderate (2) and severe (3) stage and wants xrays every six months now. Fingers crossed.
Just to add my & others experience of a hip replacement PMR. The longer the operation is delayed the less you are able to build up the supporting muscles on that leg which help the post op recovery. The other leg takes a beating while supporting the bad one while waiting for the op! Hope that helps.
It sure does help and makes sense! The surgeon mentioned two things that will impact healing outcomes....continued weight loss, and doing the quad strengthening exercises (which I do daily as well as deep water exercises 3 times per week).
I will discuss the wait time further with him in Feb, and advocate for an earlier surgery date. Depending on his response I may put things in motion to see another surgeon in Toronto. In the meantime I will check wait times in the greater Toronto area.
I had them done in a NYC hospital and was there 5 days. They uncovered during surgery tissue damage which they said was caused from some kind of inflammation process. So they also did a test for RA in hospital but negative but my white blood count was elevated due to the inflammation. A rheumatologist came in to see me. Asked if I had pain elsewhere. Said no other than the pain I had in my knees for 2 years prior to surgery. I had cortisone shots in both knees for 2 years prior to my surgery which I believe did the damage. Then I was transferred to a rehab hospital for 13 more days before coming home. Then I had 2 weeks of in home therapy followed by 3 months of out patient therapy. Then we moved full time to Florida. Hubby gets heart attack requiring quad by pass. Stress too much. Then Boom! I get PMR. Surgery, stress, getting old can cause this but bottom line it’s an autoimmune issue and food also plays a major role. I eat totally gluten free. Stopped eating all shellfish too. Just salmon, yellowtail snapper and grouper from the ocean. I take 1 mg at night. But even though down to 1 mg regardless I get tweaks now and then. I exercise in the pool-big help for me. I truly wish more research was done on this PMR.
Reading all this reminded me of something else. My first TKR was deferred because I had other health issues. Then, all of a sudden my knee collapsed completely, when I was leaving a swimming pool after doing physical therapy. It was bone on bone and I needed surgery as soon as possible. The 2nd knee went quickly, too, possibly because of the damage to the first, though I did have erosive changes due to both OA and RA. Not to be alarmist. Good luck!
I have erosive changes due to OA in the right knee with a 4mm spot of bone-on-bone contact. I think that’s why he is keeping a closer eye on it with xrays.
I appreciate your input and will be paying attention accordingly.
Hi Leslie I was diagnosed with PMR IN 2014 since then I have had 2 hip replacement one in 2016 I was still on 16 mg of prednisone and one in June 2018 down to 4mg of prednisone both time I was given extra prednisone just before the operation nothing after. Did not have flair up or any inflammation other than normal. For that type of operation I am 67 now and still downhill skiing . And hitting the gym at least 3 times a week with other form of exercise on the other day. As to flair up I did have some and also got stock at different dosage at 16mg. 9mg. 4mg. I réalisé i have to manage the information by not overdoing it.
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