My hospital says it is VERY HIGH RISK me having a hip replacement, which means I have been having cortisol injections in both hips for 5 years.
My hips are so so bad that the injections only last a few weeks rather than months.
When I was diagnosed with JAK2 and mylioproliferative neoplasm / essential thombasina ( sorry no spell check here!!) in 2015 the inflamtion I suffered, and I believe the chemo, made my hips fall apart within a year. I now have stage 4 Osteoauthoritis (PLEASE I NEED SPELL CHECK haha!!)
My question is, has anyone else been perscribed an anti inflamitory to help with pain?
Has anyone had a hip replacement ... because I am desperate and can hardly walk anymore.
Also, the drugs I am now on are:
Apixaban 5mg - twice a day for my blood thining
Celecoxib 100mg - twice a day as my anti- inflamitory
Omeprazole 100mg - once a day to protect my stomach
Butec 5 Buprenorphine - 7 day patch
Diclofenac Sodium 3% gel - for legs when needed
Parecetamol 500gms - enough for 4 1000gms doses every day
Any help would be fantatsic, as I feel quite alone, having this complication.
Thank you xxxxxxxxxxxx
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Hildrethbird
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This is a question you need to review with a MPN Specialist who knows your case. If you move forward with any surgery, the MPN Specialist needs to consult on how to handle your surgical care. While you would be a higher risk due to the MPN, that does not mean that the surgery cannot be done.
Others on the forum have had joint replacements done successfully. Between 2018 and 2020 I had four surgeries, including heart and brain surgery. The one thing that was consistent was reactive thrombocytosis following the surgery. This is expected and can be managed. I did experience a higher level of bleeding after one of the surgeries when my platelets were less well controlled. There were no bleeding issues following the other surgeries. Something to note is that most of the surgeons were unaware of the increased bleeding risk people with thrombocytosis can have. They also did not always know what to do if a bleeding event occured in the context of a MPN. That is why involvement of the MPN Specialist is so important.
Making the decision about any surgery is always a matter of risk vs benefit. While you are at somewhat level of higher risk for a hip replacement, continuing on like you are will leave you disabled and in pain. You are the only one who can decide whether the benefits of the surgery justify the risks. Suggest you review this decision with a MPN Specialist. Insist that the MPN Specialist consult with the surgery team if you decide to move forward.
I had a hip replacement in 2014 due to avascular necrosis (caused by PV, not arthritis) Most importantly, my surgeon was in touch with my hematologist, who also consulted with a platelet specialist because my platelets were too high at the time. Everything was brought under control and my hip surgery was very successful. I could hardly walk before surgery and now I'm walking pain free. I wasn't on the meds you're taking, so you'll have to get all doctors in touch with each other. Bottom line....I'm so pleased I did the surgery as I would have been crippled and in constant pain otherwise.
I had a hip replacement 2020. My specialist and surgeon spoke and made sure my bloods were checked ever day till sent home. I took my.meds up to morning of opand restarted next day. They were great. The pain meds a took before was just paracetamol. I have a really high pain threshold. But discuss with specialist. I did need a blood transfusion to get my hymaglobin right this was done in.hosp on day 3
As others have mentioned it’s wise for you MPN expert and surgeon to discuss this, hip ops are high risk for clots for everyone and of course more so for us with MPN, I was considering a hip op a year ago and one MPN expert said to get heparin jabs before op and apparently after a certain period oral can be used. That’s me and we are all different, I am probably lowish risk. After hip ops surgeons reckon the risk is highest for 6 weeks post op. Apart from the medicine interventions it’s important to move as soon as you can post op and keep moving/walking regularly at least every few hours to keep blood pumping, that’s also good advice for anyone with a MPN.
I had a Stem Cell Transplant Dec 22, 2022 as I have Myelofibrosis. I had Polycythemia Vera 12 years before that. I am 72. I had a hip replacement September, 2023 as I also have osteoarthritis. I am doing fine and going to Physical Therapy. My blood counts are near normal. I am wishing you the very best as you continue on your journey.
You're in East Anglia, aren't you, Mary? So are you seeing Prof Harrison at Guy's? I have found her team utterly amazing.I spent 2 years under a local hospital in Surrey who only offered me the chemo drug Hydroxy and an orthopod who acknowledged my need for a new hip was seriously urgent but refused me surgery until I could get my platelets down from 1000k to normal. So I suffered for another 2 years before finally getting a referral to The Prof who put me on Pegasys Interferon. Platelets were soon down to the 3-400s, I got my new hip last May and haven't looked back. Yes probably because of the MPN I needed a blood transfusion but I recovered rapidly and completely and haven't felt as well in a decade. Well apart from getting over covid right now.
I stopped the Peg 9 months ago and 2 weeks ago today my platelets were 749.
At 81, I still have serious chronic fatigue and brain fog, on or off the Peg but no other symptoms.
I see you have a lot of other health issues that you manage with medication and I am sorry to hear that. Hopefully, if you decide to go ahead with the surgery, your need for heavy duty analgesia will disappear and you will start to get your life back.
Thank you, this is sooooooooooo helpful. I am just under the local consutant haematologist, in the Macmillian unit at The West Suffolk Hospital. Perhaps I need better ? I seriously can hardly walk now as in so much pain. Normal people would have had a hip replacement 5 years ago!!! .... But I am marked as "Very High Risk". All i want, is not to get clots after the opperation, that end up in my brain, lungs or heart, which is what they have warned me of. My kids are preparing to say their final goodbyes if I have surgery, just incase I clot on the table or bleed out !! You see what I am up against hahaha xxx How did you get under this fellow at Guys. I`m not even sure I`m on the right medication here in Bury St. Edmunds because they appear to be treating so many different things, when it is all really just one, with a few extras here and there. Where are you and how did you get put under Guys. Every best wish, Mary (63yrs)😀
Hi Mary, when I was first told about Professor Claire Harrison, from someone I met at the Epsom Vegan Market, I was told it was possible to self-refer. And maybe it is. At the time I had been told itbwas chemo or nothing, so I did pursue it. Then as my hip got worse and after the first lockdown I moved to Herefordshire (about half an hour from Wales), I started following this group and learned a lot. Especially that with an MPN you have to be your own advocate.
So I started by getting my new GP to sign me up with the local haemo but that didn't go well as I clearly knew more than they did. When I produced some research to prove my point, I got "well I'm not a research scientist, I'm a haematologist. He hung up on me.
I went back to my GP in furious tears (not fake, but at my age I think it worked anyway) and demanded to be referred to Prof Claire at Guy's. So he did.
I was seen within a few weeks. Was offered either Peg or another drug I don't remember. Started Peg a couple of weeks later. It worked perfectly for me and I was on the operating table less than a year later.
Going back to self-advocacy, you have to absolutely be on too of all communications. Right from the start, as is your right, you insist on receiving copies of all correspondence concerning your case, and all blood tests. This nearly drove me insane at one point as there needed to be co-operation between my local orthopaedic surgeon, my GP surgery who was taking bloods when I had a teleconsult with Guy's rather than face-to-face. and of course Guy's.
This was after my final pre-op before surgery, when the surgeon told me we were all set and I could expect my surgery within 2 or three weeks. He then decided to write to Professor Claire for a final all clear but Sent the letter to the GP by accident, with no copy to me. After an awful lot of jumping up and down (well metaphorically anyway) I found out from the medical secretary that the letter existed, the Prof knew nothing at all about it and I had to track it down and get a copy to her.
This was still tail end of covid so everything was pretty chaotic. So cover all your bases and still expect the unexpected.
One more thought Mary, I do know of a lady, about my age don't think she was an MPN patient, I met her daughter in a Facebook hip group i joined when i was expecting my surgery. She too was at high risk for hip surgery because of other issues. She was actually referred to Guy's for her surgery and last I heard was doing really well. I did wonder about pursuing that option, and may I should have. It would have dramatically have improved communications and the MPN team would have been on hand in case they were needed.
When I needed dental extractions my dentist didn't want to know, The Prof referred me to Guy's own dental oncology department. A beautiful suite on the 21st floor of the tower block, I think. I was treated really well and everything went perfectly.
Well I've shared everything with you that I can think of.
Sorry to hear you are having such a rough time with your hips. The celecoxib is a decent anti-inflammatory and you've already got an opioid patch with the butrans patch, so I would really encourage you to speak with your MPN specialist about liasing with the ortho team re you having an op if your quality of life is so badly affected by the pain and immobility. Obviously it is a risk vs benefits weigh up but being immobile and associated worsening fitness also impacts on your cardiac risk and clotting risks.
I had a hip replacement aged 41 soon after being diagnosed with PV 5 years ago. I'd had multiple pints taken off to get my Hb down and the decision was to start Hydroxyurea to get the platelets down to a sensible level. I was then commenced on 6 weeks of apixaban after the op - I note you are already taking this which is a good blood thinner. Platelet levels often go up after any operation/illness but that can be monitored and your meds adjusted if needed. My recovery was slower than someone without an MPN but it has definitely been worth having the hip replaced to reduce pain issues and improve function and mobility to enjoy life a bit more with my 12 year old daughter.
Hope that helps a bit, but suggest you chat with your MPN team and GP to see if they can get letters off to ortho to explore the option of surgery as having repeat steroid injections not great for you either. Good Luck -Heidi(NHS GP with post PV MF)
Good news !! I have been refered to Professor Claire Harrison, Prof of Myeloproliferative Neoplasms and Clinical Director at Guy’s and St Thomas’ Hospital (GSTT) in London. !!!
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