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[KittyBee]

Hi All!

Bit of background - I've suffered with joint pains, muscle aches and low energy for a few years and was told it was probably fibromyalgia and I am under a rheumatologist who has prescibed hydroxychloroquine for 'connective tissue disease'. Meds haven't done much and I'm not convinced but not keen to try different meds at the moment - would rather try HRT as I suspect a LOT of my problems are hormonal. Anyway.

I had a phone consultation with my GP in August and she was happy to prescribe me with HRT if I wanted it. She recommended Elleste, which I have been unable to get as there are supply issues.

Fast forward to a week ago, when I had my phone consultation with rheumatologist. As my symptoms haven't massively improved, she wanted to try me on a short steroid dose (yay!) and based on the results, would prescribe something else (still not keen). I happened to mention trying to get HRT and she asked which one. I told her Elleste and she asked if my GP had recommended patches or cream, as based on me having 'antiphospholipid syndrome', I am at increased risk of thrombosis with HRT.

Soooo....nothing in my records about this (that I can see) and consultant is sending a letter to GP about this. But WHY are they not talking?   

Also, has anyone else had either CTD or antiphospholipid syndrome and HRT?

[CLKD]

They don't communicate but notes should be available on-line between GP and Consultants.

I believe that Elleste has been out of stock for ages.  Best that the two share information B4 you try any treatments?

How is your VitD level?  Also as oestrogen levels drop many of the symptoms you describe can happen ........

[sheila99]

She's right that transdermal is safer than oral. Perhaps ask your gp for hrt in patch or gel form?

[KittyBee]

How is your VitD level?  Also as oestrogen levels drop many of the symptoms you describe can happen ........

It's on the low side of normal. I've been using a sublingual spray for a couple of months but haven't noticed any difference yet. Of course, if symptoms are due to hormones as you mention, then it won't make a huge difference.

She's right that transdermal is safer than oral. Perhaps ask your gp for hrt in patch or gel form?

The consultant is writing to the GP to update her and request she prescribes patches, so have to wait for that to arrive.

[Uptick]

Hi KittyBee, connective tissue disorders and other autoimmune disorders (including APS) are very hard to diagnose and many of them occur together with overlapping symptoms. Most of them are treated the same way so that's why you have been given hydroxychloroquine and now steroids.

HRT is absolutely contraindicated because of your high risk of blood clots. Although transdermal has a lower risk profile, it's better to avoid anything that can increase the risk. It could also trigger Lupus symptoms in the future.

[CLKD]

VitD needs a prescription for the correct amount ........ spray on won't cut it at this time of year ;-)

   Uptick

[KittyBee]

Hi KittyBee, connective tissue disorders and other autoimmune disorders (including APS) are very hard to diagnose and many of them occur together with overlapping symptoms. Most of them are treated the same way so that's why you have been given hydroxychloroquine and now steroids.

HRT is absolutely contraindicated because of your high risk of blood clots. Although transdermal has a lower risk profile, it's better to avoid anything that can increase the risk. It could also trigger Lupus symptoms in the future.

So no HRT at all? The consultant was happy to mention patches in the letter to my GP so she seemed to think it wasn't that bad an option. I wasn't aware that I definitely had antiphospholipid syndrome - it was mentioning as a possibility because I have a history of recurrent miscarriage. Obviously if HRT is a big risk, I won't take it, but then I am stuck with all the symptoms again.

[KittyBee]

VitD needs a prescription for the correct amount ........ spray on won't cut it at this time of year ;-)

I won't get that, my level is in 'normal range'.    I was given a prescription of Vitamin D tablets a few years ago 'just to see' and they didn't do much to raise my levels - apparently they weren't the best quality. The only time my Vitamin D level got slightly raised was when we had that 'heatwave' a couple of years ago - a good few weeks of sunshine.

[Uptick]

It's probably not a definitive diagnosis, but if you have positive antiphospholipid antibodies test, it's risky to be on HRT. How old are you and where are you menopause wise? Maybe most of your symptoms are from the autoimmune disorder, not menopause, so the steroids might be able to control them.

[KittyBee]

I'm 47, not had a period this year, possibly for a full 12 months (I can't remember exactly because brain fog). So at least perimenopausal. I have extremely rare moments of hot flush, literally about 10 seconds and by the time my jumper is off, it's gone. I mostly veer towards feeling too cold - vest, t-shirt, jumper and 'snood' on today.

I have had symptoms for about 4 years - joint aches, muscle pains, stiffness in hands and feet first thing in the morning, feeling exhausted and unrefreshed on waking, physical weakness, poor concentration and memory, clumsiness and balance issues, dry eyes, feeling cold. Most recent symptom to appear is thinning hair. 

I have had blood tests done in August and according to my GP, they are all 'fine'. I noticed on several tests over the last few years that some of the blood count tests were barely in range, which might indicate a type of anaemia. Thyroid test all 'in normal range'. Inflammation markers, according to rheumatologist are 'slightly high' but my joints aren't swollen and not all of the pressure points for fibromyalgia were painful.

I don't recall having the APS test done, but I must have had it. Will see what the consultant letter says when it comes. I have had steroids for asthma before (usually if a cold turns into a chest infection) and I haven't noticed a reduction in symptoms, but they're probably a different sort of steroid anyway.

It's so hard to piece things together. Having the consultant and GP not sharing info doesn't exactly help either.

[CLKD]

Interesting .  Feeling cold can be attributed to thyroid function disruption.

When I had very low VitD levels I would do weeding in the garden for 20 mins. then have to sit.  Still.  For 2 hours.  Blood test showed very low levels and capsules on prescription made a huge difference. 

Found it : I was prescribed Fultium-D[3] 3,200 IU - then I had to remember where to put this info. 

[KittyBee]

Interesting .  Feeling cold can be attributed to thyroid function disruption.

When I had very low VitD levels I would do weeding in the garden for 20 mins. then have to sit.  Still.  For 2 hours.  Blood test showed very low levels and capsules on prescription made a huge difference.

This is where I find the fibro diagnosis difficult to understand. I struggle physically to get up in the morning, so my husband gets our daughter up and ready. Then I am able to look after her the rest of the day (she’s 3 and a half). I don’t go to bed early, I’m not ‘exhausted’ exactly, it’s more of a physical weakness/fatigue rather than needing to sleep. Does that make sense?

[CLKD]

Yep.  Mum had crashing fatigue; she would be doing something and suddenly need to sit down to sleep.  For several hours.  It annoyed me a lot  as I didn't understand.

I take medication to ease depression and have a vague feeling of 'hung over' and my brain as I wake feels tired. Due to busy involved dreams I rarely wake feeling rested.  Once out of bed and at it I'm OK.  I can sleep on the linen line when my brain needs to 

How's the 3 year old ...... busy ? 

[KittyBee]

She gets a lot out of the day, yes. 

I have no problem getting to sleep at night, and I don’t remember waking that often. I wake up feeling like I haven’t slept at all though, regardless of how many hours I get. So I figure I might as well stay up in the evenings and get stuff done.

[CLKD]

I've got some dusting that requires attention