Not exactly PMR but advice please about post menopausal dryness.

[Zebedee44]

Since I was diagnosed with PMR in 2017 I have had frequent episodes of cystitis requiring antibiotic treatment. These seemed to be made worse by the Calcium and vitamin supplement I was prescribed so I stopped taking it. But I still suffer episodes of UTI/ cystitis about once a year and now my GP has prescribed a pessary for vaginal dryness.

I had a full hysterectomy at age 60, just before PMR was finally diagnosed. Since then I have had no partner so I have been ignoring that aspect of my life and my body. The hormonal functions of my body haven’t been very important, but now in adrenal insufficiency territory (too much for me at 5mg so now back at 6mg) i understand that hormones play a part. I suffer already with migraines and know that I am very sensitive to new drugs in my body so Im hoping someone can reassure me about VAGIRUX pessaries before I start using them.

[PMRpro Ambassador]

Sorry can't help. Is there an HU forum for menopausal problems or Sjoegrens which is a dryness problem?

[Gimme in reply to PMRpro]

Funnily enough, I have a doctor appointment today to discuss my blood results and I planned to ask why my PMR couldn't be Sjogrens, given some of my other symptoms. Or if I possibly have both.

[PMRpro Ambassador in reply to Gimme]

Sjoegrens needs confirmation of the antibody but there is also sicca syndrome which is identical except for the antibodies and isn't uncommon in autoimmune disorders.

[Gimme in reply to PMRpro]

Inflammatory markers have never been raised and nothing for lupus and RA antibodies. In fact, if you go by my recent blood results, I look perfectly healthy, and the last check was pretty comprehensive. Only neutrophils were slightly out of spec, I am supposing due to pred? The grumpy rheumatologist wants me off the pred, but the GP that I am seeing today is a lot more compassionate in her attitude and much less precipitous, so I am hoping that we can have a productive discussion on how to proceed. Certainly, if they want me off pred, then they are going to have to come up with a plan for management of pain, stiffness and fatigue. Even if my bloods look good, I know in my heart of hearts that here is something really wrong and it isn't just ageing. However, I am hopeful that if I can stick with this GP that she will be helpful and follow it through. I'm seeing her at 12.30, so will update when I get back if there is anything to share. What a heart sink all this is. Just wish that they would make up their flipping minds.

[PMRpro Ambassador in reply to Gimme]

I don't get it - I KNOW they are terrified of pred, but it has given me over 14 years of a reasonable quality of life I wouldn't have had without it. I haven't crumbled yet. I'd had 5 years before pred - had I had to manage without pred much longer, I wouldn't be here now, it wasn't life, it was existing. I dread the concept of returning to the UK - I would lose the 2 drugs that give me a decent QOL and unless I was very lucky I might even lose pred altogether.

[Gimme in reply to PMRpro]

Frustrating, isn't it? tbh, I think that a lot of the obstacles that I have encountered are due to lack of continuity of care and each one having a different opinion on what to do next. Plus, I am not convinced that they are sure what is wrong with me. The lady GP is the first one that made me think that she has any understanding of what it is like to have an illness like this, and on that basis alone, I'm going to try and stick with her. I'm trying to dump the grumpy rheumatologist. Any healthcare professional who starts a sentence with "let's get one thing straight" loses my trust and respect there and then. I'm a sick adult who needs help and care, not a naughty schoolgirl caught scrumping apples. Last time I saw the guy, I came out of his office feeling like some smackhead.

[PMRpro Ambassador in reply to Gimme]

And what was the thing that he wished to get straight? That HE was the expert and you were only the little woman patient who knew nothing? Addicted to pred and the euphoria - that I have get to experience and I have been on the stuff for 14 years ...

I would reply in the same vein - adding "Don't confuse your few hours of theory lectures with my x years of living with it"

[Gimme in reply to PMRpro]

ha, yes, I saw that meme on facebook and I stored it away in my brain for later use. Trouble is, when I see red, I forget these useful things. Yes, he was being patronising, and I'm not entirely convinced that he doesn't get off on making women cry. When I told the lady GP what happened, I could tell by her reaction that he most likely has previous history.

oh, and he used exactly these words "they get hooked on them". No euphoria here either. Pred makes me feel crap and it did right from the beginning. No way I would take this stuff to get my jollies.

I'm just writing a list of all my bothersome symptoms in prep for my appointment and it ain't half a long list. My bloods may look OK, but on paper, I look pretty unwell. At least I have my pred induced near psychosis under control for this appointment and I will be articulate and coherent. I was away with the faeries the last time I saw her.

[PMRpro Ambassador in reply to Gimme]

If he has a reputation - it needs calling out. We only "get hooked on them" because they take the pain and stiffness away, not because it is an addictive drug. And you CAN get the hospital to assign you a different doctor - PALS do manage to do something occasionally. Or you demand referral to a totally different Trust on the grounds of breakdown of relationship.

[Longtimer in reply to PMRpro]

He sounds remarkably like you know who beginn ing with M!

[PMRpro Ambassador in reply to Longtimer]

Doesn't he ...

[Gimme in reply to Longtimer]

hmmm, MB is his initials. Same guy?

[Longtimer in reply to Gimme]

M is the first letter of his surname. Which hospital is MB in?

[Gimme in reply to Longtimer]

It's not the same guy then. I'll direct message you, if that's OK, as I don't feel comfortable saying more than that on an open forum.

[Longtimer in reply to Gimme]

That’s fine.

[Hidden]

Great stuff! Use at full dose. Takes about 3-6 months to have complete effect. I have used for 6 years, as per above loads of info elsewhere. Womens Health Concern site does a good factsheet.

[Gimme]

I've used vagifem for last 3 or 4 years, which is similar, and just been switched to vagirux. The dose level is extremely low. I was prescribed it because of cystitis like symptoms, due to not being able to empty my bladder fully, with predictable results. It is supposed mainly to help the dryness, but I believe also helps with the loss in elasticity of the bladder walls. It did the job anyway. I went from feeling like I had a permanently full bladder and getting up about 15 times night, to almost normal again.

[Greenthought]

Probably too much information, but I was prescribed pessaries in a similar situation and found them a bit too drippy. I changed to a vaginal cream, to be inserted with an applicator once a week and found this much better! Good luck.

[Body_bonkers]

It’s a low local dose so hopefully you’ll be fine. I suffered with on/off headaches first couple of weeks but thankfully migraines did not return

[Zebedee44 in reply to Body_bonkers]

Yes, it’s the recorded side effect of migraines that worries me most, I’m a regular sufferer and don’t need any more reasons to feel naff.

[Coffeebeans]

Go for it. I've used Vagifem for several years now which is another brand. The first 2 weeks at a loading dose can be uncomfortable with a bit of cramping but persevere, they will make a huge difference. Improvements continue for a good few months but they do help with discomfort early on and are prescribed for exactly the problem you have. In fact, your GP is up to date and fab!

The dose is tiny and from memory, the leaflet is the same for HRT which is daft. The doses are so tiny in the pessaries but they work because they are local to the area. You can always stop if they don't suit as well.