Long term polymyalgia rheumatica: I was diagnosed... - PMRGCAuk

PMRGCAuk

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Long term polymyalgia rheumatica

Tilly21
Tilly21

I was diagnosed with PMR almost 21 years ago. My doctor says I am one of the unlucky ones. Several friends got it after me but are now better. Has anyone else had it this long?

50 Replies
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PMRpro
PMRproAmbassador

Not quite - 15 years and counting! There are a few around in the teens though whether they are still here I don't know.

17 1/2 years now but my rheumie is now calling it "PMR onset seronegative Rheumatoid Arthritis"

PMRpro
PMRproAmbassador in reply to podo

Do you have any proof it is RA - imaging for example as that's all there would be for seronegative? The lengths they will go to to not admit PMR can last lifelong ...

podo
podo in reply to PMRpro

No real proof. At my my last flare (2 years ago now) my hands became very stiff, dr Hughes took one look & said it was RA. Uping my pred to 10mg (was 5) sorted it but HCQ was added in to stop joint erosion and I'm now on 2 x 200mg of that + 3mg pred. I remember you suggested RS3PE at the time but dr Hughes didn't seem keen on that! I'm still hoping it maybe however, as it seems to match my case better & of course it's "remitting" I haven't taken the step of trying that to the limit by reducing or stopping meds! Don't want to rock the boat under current circumstances.

PMRpro
PMRproAmbassador in reply to podo

The HCQ seems to have achieved something though. Has it been ok?

podo
podo in reply to PMRpro

No problems as yet, although I'm a bit concerned about long term effects such as Retinopothy (my retina is already thin) & also my eGFR has been on slow decline in recent years. However, at 81 that could also be age related.

PMRpro
PMRproAmbassador in reply to podo

But you are monitored for both I assume?

podo
podo in reply to PMRpro

Should be, last bloods done in Feb but eye tests were cancelled due to Covid, hope to get that soon. It seems that effects of HCQ are generally long term, 5 years or more so hopefully still time to reduce or change meds. Although I'm not keen on MTX which seems to be the next option.

PMRpro
PMRproAmbassador in reply to podo

They are generally long term - but there was someone in the lupus forum where it happened much more quickly than usual.

Suffererc
Suffererc in reply to podo

What is HCQ and GFR please

PMRpro
PMRproAmbassador in reply to Suffererc

Hydroxychloroquine - a rheumatology drug (the one Trump made famous with claims for Covid)

Glomerular filtration rate - the amount of fluid the kidney is filtering in a given time. Higher rates mean the kidneys are functioning well, lower rates means there may be kidney problems.

Suffererc
Suffererc in reply to PMRpro

Thank you

MrsNails
MrsNails in reply to podo

Hi

This is a Topic that interests me greatly as l’ve had PMR for close on 9years.

What would be helpful is if you could put this information in your Profile with the Date of Onset.

Thanks

MrsN

podo
podo in reply to MrsNails

Have done!

MrsNails
MrsNails in reply to podo

Thanks Podo 😊

Oh, Tilly....

I’m so sorry to hear that, l feel hard done to at the moment, 9 years next month & currently feeling very fed up,

what treatment are you on now?

Kind Regards

MrsN

PMR 20 years and GCA 10. Still soldiering on.

About eleven, but about eight or nine of those years the new dr. said it wasn't, but she hasn't found any definite name yet, just inflamatory arthritis. I still take the prednisone, but she says it isn't helping, and it isn't at 22.5 dose. Just going along in tremendous pain.

PMRpro
PMRproAmbassador in reply to Trevgrrl

With that dose and if she thinks it is an inflammatory arthritis - why has she not tried methotrexate or lefunomide? Both standard in inflammatory arthritis and both touted as steroid-sparers in PMR ...

MrsNails
MrsNails in reply to Trevgrrl

Hi

This is a Topic that interests me greatly as l’ve had PMR for close on 9years.

What would be helpful is if you could put this information in your Profile with the Date of Onset.

Thanks

MrsN

I am on Prednisolone and the dose varies according to the pain. Have tried Pilates as it is fairly gentle exercise but had to give up unfortunately - too difficult. Feel so very sorry for you all, especially those who, like me, have endured it for such a long time. I am determined to be positive and remind myself it’s not life threatening. Otherwise I would sometimes be in a pretty low place.

PMRpro
PMRproAmbassador in reply to Tilly21

Then you maybe needed a better Pilates instructor - mine was wonderful and adapted anything that was a problem for me. And always watched out that I stuck to what was right for me that day - sometimes it was beginners level, sometimes it was advanced stuff. But it did help the back problems a lot.

I’m just 7.5 years and taking 4mg Pred. Have tried to reduce further even using the DSNS method but that resulted in a couple of flares. Rheumy wants me to start reducing again. I’m very lucky, mostly pain free, just achy sometimes after doing too much and fatigue occasionally. Missing my aqua classes that kept me more toned and mobile. Trying to walk more to keep things moving as that helps.

I have two friends both diagnosed with PMR 24 years ago. One has never been able to get below 3 mgs Pred and the other has recently been told that they do not think she has ever had PMR! ? Possibly that it could be a ‘muscle storage’ problem and she is waiting to see a neurologist? Myositis.

PMRpro
PMRproAmbassador in reply to Vaggers

The treatment is the same though: corticosteroids? It is easy enough to differentiate from PMR: the creatine kinase blood test is raised in myositis, not in PMR. It is one of the tests that should be done as routine as a differential diagnosis.

Vaggers
Vaggers in reply to PMRpro

Yes! My friend was diagnosed with PMR by a GP she worked for based on a raised CK. Her ESR and CRP were always normal. Big misdiagnosis I feel.

She is in so much discomfort/pain since her rheumatologist made her come off steroids while she waits 6 months to see a neurologist. Given that steroids are the treatment for Myositis I feel this is puzzling (& cruel)

PMRpro
PMRproAmbassador in reply to Vaggers

Having a raised CK is the rule out - not PMR! Lord - can't they read? But that pre-supposes they look it up ...

Poor you! I'm 8 years and counting with PMR & GCA. I can never get below 7.5 of prednisolone but currently on 17.5 due to a flare. I find Pilates a helpful form of exercise and have a great teacher who kindly gives me any alternative exercises I need - classes on Zoom at present!

I too am kept going by the fact the disease is not life threatening and could be worse.

MrsNails
MrsNails in reply to headgirl

Hi

This is a Topic that interests me as l’m on a similar time frame as you, PMR only.

What would be helpful is if you could put this information in your Profile with the Date of Onset.

Thanks

MrsN

headgirl
headgirl in reply to MrsNails

Profile updated. I was interested to see you take Methotrexate as well as Prednisolone. The combination has never been suggested to me but I will bear it in mind now. May I ask if you experience many side effects with Methotrexate, I understood that it could cause stomach problems.

MrsNails
MrsNails in reply to headgirl

Hi, yes for some people the nausea can be a problem & l suffered from it for about a month (only on the day l took it but was a bit 🤢 if l smelt anything fatty!) then it gradually faded away.

The options are having it by injection to by pass the digestive tract, l’ll copy you my MTX Story but it needs updating....

And, l keep promising to do it! 😉

If you have an questions please ask.

Regards

MrsN

healthunlocked.com/pmrgcauk...

headgirl
headgirl in reply to MrsNails

That's really interesting, thank you for sharing. I've always done well on Pred except for weight gain & moon face 😬.

MrsNails
MrsNails in reply to headgirl

If you look at my Profile, look at ‘My This Is What Two Stone Looks Like’ l have lost that weight this year, the threat of Type2 Diabetes!.....

healthunlocked.com/pmrgcauk...

headgirl
headgirl in reply to MrsNails

Well done - that's great!

Janetknit
Janetknit in reply to headgirl

I have been on methotrexate for three months , along with 15 mg of prednisone. I have had a positive experience with the methotrexate, the only side effect has been I am a bit emotional the first 24 hours following my dosage. Nothing serious, I just can tear up easier to sad movies. No stomach issues or pain... I feel the prednisone ups and downs are more in control while on the methotrexate. I am due for a decrease of prednisone October 1 st, so methotrexate was increased to 15 mg to help keep inflammation down as pred is reduced. Fingers crossed!

MrsNails
MrsNails in reply to Janetknit

Hi Janet

Did they start you on Methotrexate at the same time as Prednisolone?

MrsN

Janetknit
Janetknit in reply to MrsNails

I started prednisone the first week of April at 20 mg, then reduced to 15 mg a month later... had immediate flare to which my rheumatologist put me on methotrexate. He warned me that the results would come in two to three months and to stay very non mobile as possible. The two drugs have coordinated together well over the last 5 months. I thought it was only three, but it has been 5 months. We have done no reduction since the first.... this coming week I will start reducing to 12.5 mg.

MrsNails
MrsNails in reply to Janetknit

It’s fairly unusual to start MTX almost at the beginning but l was at a PMR Roadshow a couple of years ago & they discussed this as a possible way forward with treatment, so it will be interesting to follow your progress.

I’m on MTX too, hence my interest.

Kind Regards

MrsN

Janetknit
Janetknit in reply to MrsNails

Thanks for your reply, I will keep you posted about my journey with methotrexate and my PMR . I have been learning so much from all of your experiences , this forum has been a lifeline!

PMRpro
PMRproAmbassador

For completeness, I'm just adding this from dcctrains whose reply seems to have strayed to a new thread - seems to be happening a lot recently!! PMRpro

"I have also had it since March 2000, so not quite 21 years, but close. My Rheumatologist also says I am one of the unlucky ones. Now on 5mg Prednisolone with 3 monthly 160mg DEPO. I also have flares."

healthunlocked.com/user/Dcc...

I’m 8.5 years in and on 11mgs but hoping I might get lower now that my OA has been sorted! I am not ready ( and may never be) to accept that it might never go away.

It will be 7 years for me next March. Started at 40 mg and have never got below 10 mg. Now at 15 after a flare about a month ago.

Thank you for all comments. I've suffered with PMR for 6 years with the last 3 on maintenance dose of 3mg prednisolone, not being able to get lower. Earlier this year a Dr phoned to instruct me that I couldn't stay on it & to gradually cut the dose over the summer - which I did. All symptoms have come backagain & blood shows PMR flare up, so back on Prednisolone 10mg. It is actually reassuring that some of you have been treated for a lot longer than I have - that in actual fact these conditions don't always fit the text book description!

PMRpro
PMRproAmbassador in reply to bugs-bunny

practicalpainmanagement.com...

40% of patients still required a low dose of pred at 10 years. This is a study from a world name in the field - now retired unfortunately so we need to get through to his more junior peers.

MrsNails
MrsNails in reply to bugs-bunny

I think that’s the problem, a lot of us are ‘Atypical’ & don’t fit the mould!....

20 and counting, PMR/GCA, just went back on 40mg pred,up from 7mg. SED rate shot up to 95. Am in US, and I think the stress of the craziness here is a contributing factor.

MrsNails
MrsNails in reply to phebamom

Hi Phebamom

20years? Wow! Oh my word! Could you put that information on your profile as it would be really helpful.

Sorry to hear that you’re SED Rate has shot up & l do believe the stress of Covid is having an impact on us all.

Several Members have talked about ‘Flares’ & just not feeling as well as they might, l have discussed this with two GP’s & my Consultant & they all concurred that yes this could be impacting on us without us actually realising it.....

Keep Safe & Well

MrsN

I may do something later on my profile. I tend to stay low key. I have family members who have stalked me on the internet in the past. I am careful. I know for a fact that emotional stress is a huge factor for me. I have suffered a lot of trauma. Being in the U.S. right now is just terrifying. Both hubby and I are on edge. It is like Americans have given up on the virus, and whoever dies dies. More important are parties, sports events and trips to bars. I am sorry, I digress. I made 7 trips to Mayo in 2017 for the final diagnosis on the GCA. it has been a long ride. Take care

MrsNails
MrsNails in reply to phebamom

Bless You, keep your Profile as anonymous as possible, just the dates or length of time you’ve had PMR &/or GCA we’ve noted there are a few more Long Time PMR’ers.....

Things are not great in the U.K. at the moment with Covid & daily rising numbers.

Take Care

MrsN

Hello all...too many posts to read but I chanced upon your mssg stream and maybe my story will help you....

Diagnosed with PMR 5 yrs ago. I needed high dose 40mgs Pred for crippling muscle pains in legs and arms. Inflamatory markers came down and despite ongoing symptoms was told I was in remission after 2.5 yrs. Was initially told I had 'large vessel variant' & all my antigen tests negative. had CT scan etc & did not have GCA.

At my first appt' I mentioned that I was getting slight pains in my hands.

Felt desperate and eventually at 3 yrs went to see private consultant in london. same answer...my test were all good and I was in remission despite the fact that I still had moderate muscle pain and interestingly hands/wrists still hurt and slightly swollen.

In desperation 6 months later I paid again to see a private Rheumatologist and BINGO

He took one look at my hands and ordered an MRI using FLUROSCOPY. this will show inflammation to surrounding tissues...a sign of RA not visible on Xray etc. I remained back under the NHS. Early treatment is important to prevent eventual damage to joints.

the relief of being believed and having a diagnosis...even a bad one...was tremendous and cannot be understated. Suspect we all know this feeling!

At 5 yrs now I am on high dose Methotrexate and trying my 2nd Biosimilar drug. It is a long journey and you need to try out different meds to eventually progress up the tree to find the one that suits you. I have read that 20% of sufferers are sero negative. I understand I initially had PMR followed by Inflamatory RA

Dont be too hard on the Drs though some are definitely of a better caliber than others. Make careful symptom records and just keep gently pushing if you can. Remember it is difficult to diagnose.

A useful place to visit is the nat' rheumatoid society on line.

good luck all and hope this has helped you a little

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