joint issues

[IrishHiker]

anyone out there both with a history of blood clot and having ET? I am having increased issues with joint pain and recently tendonitis for 6 weeks.

I know normally we get told not to use HRT especially with a history of blood clots. I have also read with new lower dose options on the market it may be possible to benefit from HRT.

I do yoga and walking to stay active. I am 67 and had my uterus removed in my 40’s but kept the ovaries. They seem to have finally “bit the dust” this past year because the joint pain began then.

Any feed back appreciated. I do plan on bringing it up at my next visit in a couple weeks but wondered if there was a “kindred soul” out there who has dealt with same issue?

[forwardocho]

I have ET, triple neg. Diagnosed Jan 2016, aged 55. No history of clots, except one suspected a year ago. The past few months I have had the worst joint pain, so much so, I am now being referred to Rheumatology. The worst pain is my hips, pelvis and hands. I've noticed little nodgles appearing on the tops of my fingers, which really freaked me out, as that was new. My doctor thinks it's arthritis. As for my hips and pelvis, I'm finding it difficult to walk after sitting for short periods of time and my pelvis literally 'clicks' when I stand up. I don't know if it's the change in weather, but it's never been this bad.

[hunter5582]

No hx of blood clots but extensive hx of joint pain. I have osteoarthritis in many joints, tendonitis, plantar fascitis, spinal deterioration, worn/torn meniscus in knees, etc. I have found a few things that help. Curcumin has done a better job controlling joint pain than any NDAID I ever took, with fewer risks/adverse effects too. I have also had hyaluronic acid injections into the knees. That did n amazing job reducing pain. It allowed me to avoid a potential surgery.

I do know some women with MPNs have successfully used HRT. This is really like any other decision we make regarding out treatment. it is about doing a risk-benefit analysis. Are the benefits worth the risks based on your goals, risk tolerance, and preferences. If low-dose HRT would result in a significant improvement in your quality of life, then it may be worth the risk based on your preferences.

I do think it is very important to be clear with our care teams what our goals are. providers do not always have the same goals as their patients, nor the same attitude about what risks are worth taking. It is the patient's goals, risk tolerance, and preferences that need to drive decision making in these situations. I always make clear that maintaining quality of life is the primary goal. Extending length of life is important, but secondary. Suggest making it very clear to your care team that managing joint pain is now a primary treatment goal and worth doing whatever it takes to improve your quality of life.

All the best and do please let us know how you get on.

[IrishHiker in reply to hunter5582]

Thanks for your reply Hunter. I do use both turmeric and curcumin (high quality supplements too!) but after a month or more have not seen much improvement.

What is odd is I developed lateral epicondylitis after my Covid booster and despite my rest, applying ice and using compression band on it it has lingered on.

I plan on advocating for a low dose patch for HRT and will keep fingers crossed it helps.

[EPguy in reply to IrishHiker]

I've been ok on joints etc till recently. I posted on a botched flu shot I got. I believe the needle was too long. I think it's interacting with my IFN and I get mild joint pain in various areas all over and can't sleep on that shoulder.

I have neurologist appt planned as I think it's mostly nerve for me but can't see Dr till Feb.

[IrishHiker in reply to EPguy]

I literally feel your pain!

[hunter5582]

Lateral epicondylitis does not sound like any fun at all. I get tendonitis in the tendons that run on the back of my hands. There is actually a set of exercises we do in Kung Fu training that helps preserve the ability to bend the wrist backwards. This is vital in martial arts training.

Hope the HRT patches work for you.

[Wyebird]

I have had all of the above and am same age with ET. It’s hard to tell what is related and what isn’t. My gut feeling is your tendonitis is unrelated. Do mention it at your next visit though.

[Norma1831]

Like Hunter I have found curcumin highly effective for joint pain and would urge you to consider taking for a longer period to see if curcumin is effective in the longer term. Curcumin anti inflammatory properties may also be useful in staving off other inflammatory threats to the health of people with ET. Good luck with low dose HRT.

[Bobadog]

Hi there,

Sorry to hear about your joint pain.

I too have experienced increasing joint pain over the last 2-3 years,which is affecting my daily life now.I still walk,swim etc but much less than before ,due to the pain,predominately SI joints,hips.

I have been taking curcumin/turmeric,as Hunter kindly suggested regularly for several years,which has sadly made no difference.

NSAID plus paracetamol eases the pain.

I was referred to a rheumatologist,from Guy’s who was very thorough.

Nothing much to report rheumatology -wise.

I saw him privately due to a long waiting list.

He prescribed a different NSAID,’Etoricoxib’.

This has an anti inflammatory effect similar to the other NSAID,but is kinder on the stomach.

There is no need to take Omeprazole with the Etoricoxib .

Omeprazole can reduce iron absorption,which is not great, as many of us are already iron deficient.

I’ll try it out for 6months and assess.

NHS don’t routinely prescribe this NSAID due to the cost ,but it may be worth chatting to your GP about it.

I hope this helps,

All the very best,

B