Osteoarthritis; family condition!

[Adlon57]

My Uncle, Mother, brother, sister have all been affected by this condition, my Uncle and older brother have had knee replacements, my mother had a major stroke from the pain of it, later died. Female; affects the fingers, Male; affects the legs and knees. I thought I had escaped the condition, last year luvely dry warm weather, bouncing around like a twenty one year old, I am 63 years of age. Unfortunately, my younger sister by 2 years, is affected her fingers, but then in the last three weeks, wet and warm, my legs tight as as drum, my knees cold, and like rusty springs, walking up and down stairs OUCH! I have to sit down most of the day, legs absolute agony!!

[jillydabrat]

I can feel your pain, literally! I often wonder if it is the pain of getting older (soon 58) or is the joint pain from PV. I wonder, also, if it’s a side effect from the hydroxy. Either way it bloody hurts! I am reluctant to have knee replacements fearing infection.

I have problems with both knees, especially walking down slopes. Even short walks around a shopping centre cripples me. I crochet and knit every day but my thumbs are getting very stiff and painful as well.

Whether it’s old age, my illness or the medication it sucks big time.

[Adlon57 in reply to jillydabrat]

It seems to affect the family, from the female line of the family, around 60. It was always a condition waiting to happen, [my big sister aged 68, always was the lucky one!] my brother and my mother's brother had knee replacements, yes they sound a bit fearful?

Being a retired historical researcher I use my hands a lot, my eyes are way past their use by dates? Getting up off chairs, and walking up and down stairs are worst!

I have a lot of medical conditions but am scared of medication side effects worsening my general health so try to keep off as many medications as possible?

Do you find hot wet weather around this time accentuates the condition?

Yes jillydabrat as you say it bloody hurts!

[jillydabrat in reply to Adlon57]

Can't say I have noticed the hot weather causing a difference but cold and damp are a true trigger

[Arty16]

Hi I have ET at 47. In the last year my knees and hip joints have been really painful. GP sent me for xrays I have mild osteoarthritis in knees and severe in one hip. I know am awaiting a hip replacement. My mum 79 has just been diagnosed with osteoarthritis and I am sure my gran.had it. When she spoke to the consultant he said it usually runs in the female side of the family. I wonder if my ET brought mine on earlier.

[Adlon57 in reply to Arty16]

Arty16 yip! just about similar, has reached hip yet, and as you say runs down female side, mine was just a disaster waiting to happen. My big sister, aged 68 always seems the lucky one? Seems to happen just around 60 in my family? all the best, there seems to be a bit of a chill in the weather now, not as painful?

[Aime]

Every sympathy, I’ve got osteoarthritis in most places but I try not to let it affect what I’m doing or get me down but constant pain is not easy to handle. My new knee from 2 years ago works great so no qualms about getting any joints replaced.

I try and think happy things like what mischief the grandchildren are up to and that always puts me in a better frame of mind. I do take slow release Tramadol every night so the majority of the time I get a reasonable sleep. Other painkillers I take when I have to, although my stomach offend rebels.

I think I have accepted what I’ve got, use meds and a try at self hypnosis to relax and distract from the constant pain. It is starting to detract more from what I can do and another two ops soon, so hopefully will help my sore feet. It’s important to remain (though not easy) as positive as possible because I’m determined not to let it beat me.

Every sympathy, e hugs sent and e flowers 💐 Aime xx😻😻

[Adlon57 in reply to Aime]

I have other med. conditions so try to stay off as many medications as possible, knee joints look likely now although my brother's new joints do not look a very good job?

Over the years my body has built up a resistance to pain killers, and I suppose my high pain threshold will help as usual and as you say self hypnosis and having a close family always helps who can identify with this particular condition. This particular condition always had a high chance to come to the surface so many of the family affected from the female line!

Thanks Aime for your sympathy!

[Aime in reply to Adlon57]

Do you (or anyone else bothered with osteoarthritis) have access to a hydrotherapy pool? The hot water itches me but it has a calming effect on pain as your muscles relax.xx def recommend.xx Aime xx😻😻

[Adlon57 in reply to Aime]

I have a shower every morning, last week cold tap in bath went, plumber told me lack of use, thanks Aime

[Tico]

Hi Adlon57, what Mpn do you have?

[Adlon57 in reply to Tico]

Tico pardon my ignorance, Mpn?

[Tico in reply to Adlon57]

Its a myeloprolifertive neoplasm, a rare cancer of the blood. Atb, tina🤗

[Adlon57 in reply to Tico]

As far as I know my blood group is not rare, [normal?] the amount various hospitals have... about two years ago they were taking blood out of me, forgot about me, blood all over the floor!!

I have a very rare condition schwannamatosis or NF3, and had three operations to remove three benign tumours, had condition confirmed two years ago, Guys hospital, London, is aware of my condition, as far as I know only one in Ireland with it. Could that be something associated?

[Tico in reply to Adlon57]

Looking at your previous posts I think you are posting in the wrong forum, mpn is a rare blood cancer. I see you have been diagnosed with numerous medical conditions,maybe other sites on Health Unlocked would be of better use to you? Atb,tina🤗

[Adlon57 in reply to Tico]

I have never really understood this site, various shortening capital letters, have you got a medical compendium to explain these letters? I have various medical conditions which I have good days or months or bad days or years even, I just want to find people whom I can alleviate my symptoms or explain a good way that I have found or they found some relief to these conditions. A good way of lightening mine or their days, a bit of humour always helps? My compendium only says I am interested in one condition, I have at least five serious medical conditions for which I would be interested in hearing from other users but my own personal healthunlocked hub does not seem to recognise I have these, I put them down recently but nothing, seemingly the only way is by pure luck?

[mhos61 in reply to Adlon57]

Hi Adlon, everyone on this site has, or cares for someone with an MPN (Myloproliferative Neoplasm). This is a rare form of blood cancer.

The abbreviations such as, ET (Essential Thrombocythemia), PV (Polycythemia Vera) and MF (Mylofibrosis) are all blood cancers which come under the umbrella term MPN. Many people with our condition are symptomatic and suffer with joint pains, inflammation etc, like yourself. I hope this clears up any confusion you may have had.

It sounds as though your condition is as rare, if not more so than MPN. It’s such a shame there is no site on health unlocked for you; maybe you could start one? It is so beneficial for people with rare conditions to share with others.

Best wishes

Mary

[Adlon57 in reply to mhos61]

Thanks Mary every time I go into hospital some medical student, grills me about the schwannamatosis or NF3, [even my chemist?] I have had it since 1974, first operation, diagnosed as Neurofibromatosis in 2005, but not fully diagnosed until 2017, [some sharp eyed local medical neurologist spotted my symptoms were different!] but I would LOVE to meet someone face to face, email to email, smoke signal to smoke signal with experience of the condition! Where would I start? Thanks for your patience!

Shaun

ps just finished off a book after 10 years could do with a break?

[mhos61 in reply to Adlon57]

I have sent you a private message

[hunter5582]

If you are JAK2+ it is worth learning more about the link to JAK2 overactivation and the overproduction of inflammatory cytokines. These cytokines are thought to be responsible for a host of the secondary conditions we experience. There is some really good research out there on this.

I am JAK2+ PV with osteoarthritis, GERD, eczema, insomnia, and other inflammation related issues. The one thing I found that really helps the osteoarthritis is a Turmeric-curcumin blend. It works better than NSAIDs. I have not needed or taken an NSAID in over 3 years since starting on the supplement. If you decide to try this be sure to pick a blend with greater bioavailability as it does not pass readily into the bloodstream. Also know that it can potentiate the blood thinning effect of aspirin (but not as much as rhe NSAIDs). There is some recent research on the effects of curcumin on tje JAK STAT pathway that is intriguing.

Hope that helps. All the best.

[Adlon57 in reply to hunter5582]

Interesting?

[Adlon57 in reply to hunter5582]

interesting although a bit over my head?

[hunter5582 in reply to Adlon57]

It only applies if you are positive for the JAK2 mutation. There has been significant research in recent years about the impact the JAK2 mutation has on the body beyond causing the body to make too many blood cells (hematopoiesis). People with MPNs often experience a host of secondary symptoms, many of which appear related to systemic inflammation. The JAK2 mutation appears to play a role in this inflammation in that it also appears related to the overproduction of inflammatory cytokines. Cytokines can be either pro-inflammatory or anti-inflammatory and their interplay is essential to healthy body function. When the balance of these cytokines is disrupted by the JAK2 mutation, it causes problems.

Turmeric has been used as an anti-inflammatory for a very long time in non-Western medical traditions. The active anti-inflammatory ingredient in turmeric is curcumin. The rheumatologist treating my osteoarthritis suggested I try it. I was on both high dose ibuprofen and later meloxicam. Once I found a good Turmeric-concentrated curcumin blend, I discontinued the NSAIDs. the turmeric-curcumin works better with fewer risks and side effects. Also safer to use when on an aspirin regimen for the MPN.

If you decide to try it there are some things to know. Turmeric does not readily pass into the bloodstream through the intestine. It needs some help. This is called bioavailability. There are various formulations to make this happen. Some, for instance, include black pepper that helps to make the turmeric more available to your body to use. You have to find a reliable brand/blend that works for you and is readily available wherever you live. Turmeric-curcumin does have some blood thinning effects and does increase this effect in aspirin (or other blood thinners). The potentiating effect is not as strong as the NSAIDs, so it is safer. It is important for your prescribers to know when you are taking this or any other supplement as they do interact.

I hope this helps. It is really worth the time to educate yourself about the MPN, your other medical conditions, and the medications/supplements that are used to treat them. Some of the conditions we have are MPN-related and some are not; however, everything going on in your body is happening in the same body. Even unrelated conditions can affect each other and the treatments will always have mutual impact. Educated and assertive patients will always receive better medical care.

All the best to you.