Rash and hot flushes

[Stinkydog]

I was diagnosed with pckd back in 1987 and have had little quirky pains on and off for years. Blood pressure well controlled and been seeing a specialist in Portsmouth once a year ( q & a chat ) and then off you go for another year " any problems speak to your GP " yeah right like they understand. My Dad has the same disease so I tend to ask him about things as that's the only person I can seem to turn to. My problem is that I've just turned 50...( not that I have a problem with getting old ) and now I seem to have started really having strange things happening. A couple of years ago started on HRT for menopause and that seem to make me feel a bit more human again , then I started to develop rash on my arms and on the tops of my legs itchy and hasn't cleared up ..went to Drs and they did a swab which came back clear ..creams won't clear it up and I also have had blood and protein in my wee which they gave me antibiotics for twice and I'm still in pain ...also I have pain in my left leg at the back like a sicky cramp stabbing pain that doesn't go off at all ...going to the Drs again tomorrow probably to be told that I have a uti again ....please could someone tells me if these are the starts of things to come ...im scared and worried as I don't know what to expect

Thanks in advance

Stinkdog

[JanWellcome]

OMG you could be me, I was diagnosed in 97 and turn 50 in January, who are you seeing at Portsmouth, I was under Dr Macnovic. I was on HRT for many years it’s not good for PKD, estrogen make the cysts grow. Now getting UTI under control is really important, the Portsmouth team put me on a profoletic does of antibiotics everyday for the last 10 year plus, if I don’t take them I get an infection, now the GP will not do this, if you have an infection call Michelle on Renal reception and ask if you can see the on call doctors, they have been amazing when I have had issues before.

The rash sound like a reaction to something you are taking, what was the last drug you started have you had it since then?

Restless crampy legs can be and issue so you might want your bloods checked, if there is any swelling in the leg they can do a D Dimmer blood test which can show if there are blood clots I get superficial ones but had a possible DVT which the OOH team had me scanned, that was after an accident thought so don’t panic, is there any pain or just cramp? If just cramp your bloods could be out of whack.

I get these things so all normal there are a lot of thing they don’t tell you about PKD just the clinical symptoms. They don’t tell you about Parathyroid, vitamin deficiency’s, anemia to name a few.

If the GP can help with anything get them to bring your appointment forward, ask the GP to throughly check you bloods, include, vitamin D, folate, PTH,B12 D Dimmer, TSH.

Oh and 3 days of antibiotics will not cut it 7 days minimum, but they need to send away to check which one will work.

I hope this has been helpful, by the way there is a fab Facebook group for PKD charity

m.facebook.com/groups/45571...

[Stinkydog in reply to JanWellcome]

Hi Jan

Thank you much for replying to me it's made me feel like I'm not losing the plot so to speak. I having bloods done tomorrow so fingers crossed this will show something and that it's not an infection.

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