Treatment and it's impact on Rheumatiod/Osteo Arthritis
helmacal
Member Posts: 7 ✭
I can't be the only person on horomone treatment (Letrozole) and suffering from increased symptoms of Rheumatiod/Osteo Arthritis. I would love to know how others have managed their symptoms. For me the symptoms came back when I was undergoing radiotherapy, and never really subsided when I was allowed to take my medication for RA again. I had to start the Letrozole before my symptoms had subsided. I'm now on an increased dosage of Methotrexate and Pyralin but still the symptoms haven't subsided. Before I had radiotherapy, my RA was totally under control. It was never as bad as I have it now. I'm taking fish oil, magnesium, vitamin c, D, Calcium, and anti-inflammatories as well as panadol osteo. I'm also taking a liquid immunity booster supplement. What else can I do? I can't take any more prednisilone because that's probably what caused me to have a hip replacement last year (the bones had completely died). I know the treatment means that the healing process takes longer but I've also had a crook back (initially a bulged disc, then a pulled muscle) for 3 months now - standing or walking for more than a few minutes is painful and hence I've had to stop teaching. Also recovering from a broken ankle too (that took ages to heal too - the wound itself weeped for 5 months) and going to rehab for hydrotherapy and physiotherapy. Yep - hormone treatment is not for the faint-hearted. Does anyone have any other ideas on how to manage the pain?
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PS - I've come off all the stong pain-killers like endone, targin and valium (I took these for my back initially when it was really bad) - and I don't want to go back on them unless I get super desperate!0
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Hi there @helmacal...thanks for the post. I don't have rheumatoid arthritis but do have three autoimmune diseases, as well as having completed treatment (chemo and surgery) for breast cancer. I have antiphospholipid antigen syndrome, Sjogren's and also scleroderma. All have affected the connective tissue throughout my body, and especially the joints, ligaments, muscles and blood vessels. For sure the Letrozole does not help. I have finally been able to stop the cortisone alltogether after being on varying doses for more than eight years. I've been on Plaquenil for the inflammation, but it is not keeping the pain and stiffness under control. methotrexate if a drug of last resort for me, as I also have stage 3 kidney disease, and the Methotrexate would be tricky at best as far as renal function goes. For pain, at night I take one Temgesic tablet, and when the pain gets totally out of control, I have children's strength Fentanyl patches. I really don't want to go back on the prednisolone as I also have severe osteoporosis for which I have a Prolia injection every six months. Talk about a shitfest.... at least the AC chemo helped with the scleroderma symptoms, but they returned within six months of finishing...in full force. Ho hummmmm.....1
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Aww wow you've got it rough too AllyJay. A shitfest it is I agree. Thanks so much for your post! I had chemo too - after the lumpectomy and before the radiotherapy. No RA symptoms then for me either - I was told it would help my RA and it did, even though I wasn't allowed the methotrexate. I had thought I was going to be put on Plaquenil by my RA specialist but it turned out to be Pyralin. I'm also on Prolia injections every 6 months as well - hence the vitamin D and Caltrate. Sounds like the opiates are the way to go when needed. Wondering if anyone's tried medicinal marijuana?1
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Hi! @helmacal
If you use the search bar at the top of the page you will find discussion threads on the topic you mentioned above as well as prolia injections et cetera
It's a great resource but also a minefield as all so individual in our treatment regimes and how our bodies metabolise same.
Best wishes with your ongoing treatment
Take care2 -
Hi @helmacal - I've had what I believe to be Osteo Arthritis for the last 20+ years that I know of - tho my mother had severe Rheumatoid arthritis with all the deformed fingers/hands & feet & had double hip replacement as well, that went wrong & eventually killed her. My knees and hips are pretty well stuffed and my hands/finger joints have been playing havoc with me ever since starting hormone suppressants after radiation mid last year.
My aches & pains etc were exacerbated bigtime by my original meds (Letrozole) then lessened a bit by Exemestane, but after 6 months built up to nasty again ..... but now I am on Arimidex and not finding it 'too bad' ... tho I have been taking Medicinal Cannabis Oil as well in recent months - which I believe has taken the edge off the pain & discomfort, big time. I no longer take pain killers or anti inflams (that I was taking multiple times every day) - and rarely have to take a sleeping tablet as it is all helping me sleep too (except when under direct stress, which I have just now, with a non cancer related problem.
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OMG Your ankle injury had me cringing, let alone your back injury! I've had a couple of injuries in the last up to 20 years that hasn't helped .... falling down the stairs at my brother's place damaging my lower back, then doing the splits in soft mud whilst fly fishing that injured my hip for 6 months+ - the back took 10+ years to 'come good', the hip - about 1 year, tho both rear their heads occasionally, even now.
I wish you all the best as you try to get off the opiods - endone always made me throw up! xxxx2 -
Hi @helmacal
I've just come off a two month break from letrozole and boy was it worth it. It remains to be seen how long it will take before the side effects escalate. I have osteo arthritis in both hands and wrists, worse in the right and an old skiing injury in my right shoulder plus massive digestive issues due to having Crohn's disease many years ago.
My approach to extra drug intervention wise is less is more. For me i can't take painkillers constantly as they upset the digestive balance so i tend to use warm water, ice, massage, music for relaxation and i see my osteopath every month. Also i am at the gym 3-4 times a week which works for me.
If you would like to try exercise see an exercise physiologist first so they can tailor make a program for you and also work with you when exercising until you are confident to do it on your own. My 85 yo mum goes to the gym once a week doing a program which is run by a physio. She has a shitload of health issues the latest being scarring on the lungs. I think she has been surprised by how much she enjoys it.
As for endone...i have only ever taken that once...never, ever again.
Being on letrozole is not easy and a lot of the the time it's a matter of trial and error as to what will work for you. Another thing i bought was a heat pad (think mini sized electric blanket) that i can put behind my shoulders. That's been wonderful. I also use spiky balls to roll out my butt (glutes), shoulders, hands, feet, anywhere really. You can get them from physios and osteos also i think Rebel has them plus anywhere that sells pilates equipment.
Best of luck in finding ways to help your body. How long are you on letrozole for? Cathxx2 -
@helmacal I've read some information about Letrozole-induced arthritis. Mine has been a problem. I chose to go off Letrozole but the worsened arthritis has remained. I'm using arthritis gloves, doing exercises recommended by my physio (and she gives me some temporary relief with manipulation), using heat-packs and occasionally taking Nurofen or Panadeine Extra. I think it's with me forever (I'm 76).1
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Thanks so much everyone! I'm going to be on Letrozole for 5 years (have only been on it for just over 2 months), so I really appreciate your imput! I'm already doing exercises and seeing a physio but maybe I can try the medicinal cannabis oil and the arthritis gloves and maybe a bit of acupuncture too. I've had enough of the opiods/painkillers (finished them a month ago) although they helped me through the worst of the backpain and I wasn't ill from them which is lucky - the stuff that made me sick was the Voltarin Osteo gel (a better alternative is Fisiocrem - comes in a purple tube - the ingredients are much more natural). I've tried ice packs to no avail, and heat packs I think would only add to the hot flushes I'm getting all over again. Time to try something different.0
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As one with severe osteoarthritis (now needing 2 new hips and 2 new knees) my onco approved not taking Tamoxifen or other drugs as the statistics did not warrant it. I do now however undergo regular acupuncture for the arthritis pain instead of taking the heap of drugs I was on. Look for a Doctor of Chinese Medicine in your area to do the acupuncture as he/she is a bit better trained in the complete person. I can recommend it as mine has sorted out other bodily issues as a bonus.1
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I’m so glad I stumbled on your post, but not glad to have found so many others also in pain.
i completed chemo and radiotherapy, managing to get just about every side going, including every hormone option explored to only find side effects intolerable and being advised to cease treatment. 4 years on I’m still in significant pain, it appears treatment has triggered inflammatory arthritis, and fibromyalgia, worsened osteoarthritis. I have Canel stenosis in my spine from degenerative arthritis, last year my left leg threw a wobbly and refused to work or feel anything, I had to relearn to walk, I’d just got confident walking with no aids and a 18mm hole has developed in my knee end of the femur.
ive tried just about every medication, running thru lots of different meds, most I couldn’t tolerate, the one thing that has the biggest impact on the stiffness and soreness has been low dose prednisone, now I have to wean of it, it’s becoming increasingly difficult to move and use feet and hands.
i managed to access medicinal Cannibus thru the special access scheme, and it helped a little, the dose required to adequately cover my pain tho was cost prohibitive, so I’ve had to cease it, and that I can’t legally drive whilst on the medication was another consideration, although at the the moment I’m not driving because of pain in my right knee.
the price of accessing it is coming down, just not fast enough.
good luck Everyone, I think it’s a matter of trail and error finding the best combination individually, our body’s react according to what ever whim lol. 😘1 -
Thanks so much for your post Flutter By. I'm glad I set this discussion up because until then I felt so alone with my suffering:( I'm so sorry you're still experiencing pain after so long. I've spoken to a few women who've been through hormone therapy and many of them tell me that the achy bones go away after awhile. I'm not so sure the same goes for RA or osteoarthritis. I'm now on another drug for RA (Abatacept - Pralin didn't work), which I inject once a week in addition to taking the 2 tablets of methotrexate every Sunday. My RA specialist tells me that my inflammatory markers are going down as a result of this, but to be honest I've not felt much improvement in that regard. I'll be interested to see if there's any improvement in the next couple of months.
I still have pain in my shoulders and hands, and my back after getting a bulged disc (and a pulled muscle just above it) 5 months ago. In addition a week ago I developed what looks to be bursitis in my groin (I find out the test results this week) - very painful to walk on. Prednisilone is a wonderful drug, but unfortunately longer term use can lead to dead bones (which is what happened in my right hip a couple of years ago so I had to have a hip replacement last year). I've been on it before but sadly, had to wean myself off it. I was given a script for Panadol Forte (which gives you constipation - sigh) and this helped a bit but I've run out of that so I can't wait until the next GP appointment to find out what this actually is and what treatment I can get for it - possibly another cortisone injection (and yes - side affects - can lead to dead bones but hey I need to walk). All I can say is, thank God my broken ankle has finally healed. I stopped using my crutch a couple of months ago but am now using again because of this groin.
In the meantime I've been using compression gloves (they alleviate some of the pain in my hands) and try to keep as active as I can (hard when I can barely walk). I also have a spiky ball for my hip and go to my physio regularly, plus doing oncology rehab (although had to skip the latter last week due to this groin). I've yet to try acupuncture or medicinal cannibus but they're next on the list as nothing else has really alleviated the pain apart from the one drug I can't take which is prednisilone.
I will post again on my progress in a few weeks. In the meantime, thank you to everyone who's posted in this discussion: AllyJay, iserbrown, arpie, Artferret, Flaneuse, BlackWidow and Flutter By I wish you all the best and hope you manage to get some relief down the track even if you're still feeling the symptoms now. I can truly empathise with what you're all going through - so much easier to understand when you've been through it all yourself. I think everyone in this discussion would all agree - it's a shitfest!2 -
OMG I can't believe more than a year has gone by since my last post - and I was going to update in a few weeks! A lot happened after my last post. My youngest moved out, Christmas happened, then Covid happened, and now I'm working from home. Not long after my last post, my RA symptoms finally came under control with Abatacept (brand name is Orencia) - I have to inject myself with it once a week (a bit like giving yourself a clexane injection after surgery so it's no big deal). It took 6 months of experimenting all up to get to this point, including a few weeks of using this drug.
The bursitis in my hip & groin finally disappeared in January this year when I could finally ditch the crutch. It took 5 months, a whole lot of physio and 2 cortisone injections to finally get rid of it. I still do exercises to make sure it doesn't come back.
So it turns out that the bulged disc isn't what's giving me trouble in my back anymore - but a couple of compression fractures. After trying everything, I think the only thing that will fix it is to lose weight - wish that was easy! Hoping you're all well and survived Covid ok. I am so thankful that I went through all my treatment last year and not this year. It would've made it all so much harder to cope with.6 -
helmacal said:
The bursitis in my hip & groin finally disappeared in January this year when I could finally ditch the crutch. It took 5 months, a whole lot of physio and 2 cortisone injections to finally get rid of it. I still do exercises to make sure it doesn't come back.
Helmacal - I've had bursitis in my foot for several years with the cortisone doing nothing. I'm interested that you had two injections. Did you have any relief with the first one? I've requested a second but the doctor says if it doesn't work the first time it won't work at all. I'm desperate for some relief from it.0 -
Sooziqu - omg that's awful - I didn't get any relief with the first one - but I did with the second - they tried a different spot and it worked! I've also discovered this amazing cream which may give you help - it's a great brand - BioCeuticals - it's called Ultra Muscle Eze Cream and it does help. They also make another good product called Armaforce - forget taking cold and flu tablets - these tablets are amazing! Expensive, but these are worth every cent! All the very best:)0
