More drugs!

[Griggser]

Some of you will know we moved from Cornwall to the Bristol area which obviously meant registering with a new doctors surgery. I’ve been about three times and you can never see the same doctor even though they say make an appointment to see me after your blood test. Anyway the last time I went was partly to discuss coming off Amitriptyline and Pregablin which I’ve been taking for Post Herpetic neuralgia following shingles. We also discussed reducing prednisolone. I emphasised that I really want to stop taking all these drugs as I don’t like the side effects. About two hours after I got home the doc phoned me to say she has done a prescription for me to collect for Omeprazole and Alendronic Acid. I’m not sure what part of our conversation she did not understand but sufficient to say I politely turned her down. I’ve had both in the past and stopped omeprazole replacing it with a more natural product of Greek yoghurt. My bone density scan came back as very good two years after stopping the alendronic acid and as I had been on it for over two years I wasn’t happy to start taking it again.

I recently hurt my neck and have been having to take painkillers for that but still try hard to limit that although some days it’s really hard.

Just thought I’d post something as I haven’t got a while but I’m still hovering in the background.

[Lizwillis]

oh Griggser, its lovely to hear from you , though not so good to hear of your “ new” GP’ treatment of you. I can imagine it must be doing your head in which is not what you want or need at all.

Has the post shingles neuralgia left you now? I really felt for you having to suffer that dreadful shingles attack along with the resultant neuralgia, as if you hadn’t got enough to deal with with PMR.

Funnily enough I went to see the “ new” lady doctor this morning with a long list which she has patiently gone through and after a squeezed in blood test afterwards she will phone me on Thursday to discuss things. Also this afternoon went to Falmouth to have an echocardiogram done by a very efficient chap who thinks he may have located the reason why I am so dizzy and and potentially totally exhausted all the time. So, we shall see.

anyway, I am hoping that apart from the frustration with your new surgery you are enjoying your new life up near Bristol. Believe the hospital up there is supposed to be good, should you need it at any time !

Glad you have popped up again!

Kind regards

Liz

[DorsetLady PMRGCAuk volunteer in reply to Lizwillis]

…..reason why I am so dizzy and and potentially totally exhausted all the time.

Adrenal insufficiency maybe?

[Lizwillis in reply to DorsetLady]

how kind of you to think of this, but unfortunately I don’t think it actually can be adrenal insufficiency as I had to up my dose of Pred from 10 mgs to 15 mgs a few weeks ago as I felt shock after being told I should have yet another ( small) operation very soon, though not fortunately related to the emergency big op I had to have last September Which kept me in hospital for over three weeks and caused me to lose 2 stone whilst there ! Of course all this caused a massive flare of PMR and I had to badger one of the consultants to be allowed to keep taking the Pred at 20 mgs. Pred delays healing, well of course I knew that! However, I needed to keep taking it!

Hopefully I will get to know what the result of the echocardiogram has shown up.

But many thanks for thinking of me.

[DorsetLady PMRGCAuk volunteer in reply to Lizwillis]

Fair enough -thought you were lower than 10mg for some reason / hope you get it sorted soon..,

[Lizwillis in reply to DorsetLady]

well, you were right to think I might have been on less than 10 mgs as I had been on 8 back in March and tried to get down to 7 but the PMR said “ no”! So back up to 10 for quite a while till recently with all this other stuff going on, so, annoyingly back up yo 15. Anyway, thank you.

[DorsetLady PMRGCAuk volunteer in reply to Lizwillis]

Still could be adrenals objecting -can start around 10mg for some people -the 7.5mg we quote is an average …..

Normal cortisol produce varies from person to person -equivalent to Pred doses anything from 10mg to 5mg….

Maybe/ maybe not?

[Rachmaninov2 in reply to DorsetLady]

I’m taking 10mg and feel that the trembling/shaking I experience when I’m doing anything that makes me feel stressed could be due to objecting adrenals. Do you think it’s possible? Have been diagnosed with Benign Essential Tremor.

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

Honesty I don’t know -it’s possible it might be adrenals.

What dose were you on when diagnosed with BET and who diagnosed?

[Rachmaninov2 in reply to DorsetLady]

Sorry, didn’t mean to put you on the spot DorsetLady. I think I was on 7.5mg, diagnosed by the rheumy.

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

No probs -and a valid question… but at 7.5mg would be inclined to think likely adrenals ….surprised Rheumy didn’t suggest that (or maybe not!).

[Rachmaninov2 in reply to DorsetLady]

Thank you. Mm me too (agreed).

[Lizwillis in reply to DorsetLady]

oh I didn’t know that. I will mention that when I speak to myGP tomorrow. I always thought you had to get down to below5 before they could test you for possible adrenal function?

[DorsetLady PMRGCAuk volunteer in reply to Lizwillis]

Yes you do need to get lower to be tested -sometimes as low as 3mg -but that doesn’t mean the adrenals wait until that dose to “play up” 😊

[Lizwillis in reply to DorsetLady]

ahh, OK. Thank you again for this.

[PMRpro Ambassador in reply to Lizwillis]

An arrythmia of some sort?

[Lizwillis in reply to PMRpro]

you may well be right! I am hoping I will get to know the result of the echocardiogram before very long. I believe you PMRpro have an arrhythmia .do you take any medication for this that helps?

I am finding all this, like many others , so debilitating. Also being investigated is a possible thyroid issue. Plus I have heard recently I have to have another ( small) operation soon, though not related to the big one, which caused me shock and which caused a flare so I am back up to 15 mgs. Not what I wanted to be doing ! Plus recently heard from someone who wanted to see us and when Itold her I really wasn't well enough she told me I had to make an effort! hurtful and unkind which naturally upset me.

Hey ho.

I am as always, So grateful for your very kind and helpful responses. When I know a bit more I will, like Griggser, do a post.

[PMRpro Ambassador in reply to Lizwillis]

They are the sort of people you can do without - tell HER she needs to make an effort - to understand ...

Yes, I have atrial fibrillation - am on an anti-arrythmic drug, was propafenine but it stopped working and now on flecainide which is very effective, as well as anticoagulation therapy while I wait for an ablation which I hope will get me off those but they aren't a problem.

[Lizwillis in reply to PMRpro]

you are right! I shall email her sometime and try to get it over to her. She has got Parkinsons and actually has been doing amazingly well, in that with medication and the use of wheelchairs etc which I have always complimented her on. Frankly at the moment I really hadn’t the energy to be bothered about seeing her. But, yes, those kinds of comments and people we don’t need.

It does sound somewhat complicated what you are and have been on for your atrial fibrillation. But you do seem to have things under control whilst you wait for the ablation which I hope makes things much better for you. Thank you for telling me about the drugs you have been taking. I shall see what transpires as a result of yesterday.

[PMRpro Ambassador in reply to Lizwillis]

Parkinson's is rough and a horrible outlook long term BUT she shouldn't try to take the moral high ground - autoimmune disease is a bit different and a very disabling thing in a different way.

[Lizwillis in reply to PMRpro]

indeed. She has known about what I have for a log time but I think, like so many others, she probably thinks I look OK so therefore I am making a mountain out of a molehill. Not to mention recovering from an emergency Hartmanns procedure . These attitudes are not kind though.

[PMRpro Ambassador in reply to Lizwillis]

Given the change in one's world after a Hartmann's I think she is being a tad naive! That's being kind ...

[Lizwillis in reply to PMRpro]

i rather think she has forgotten about any of what has been happening to me to be honest! Indeed my world has totally changed especially since having that procedure! Not what I was expecting at all! Still, I am glad all the nastiness that was inside has been taken out. Just hoping they can now sort me out with all this dizziness and exhaustion, plus find out about the thyroid issue. Just really being a bit fed up with being a useless lump.

I do so appreciate your kind thoughtful words, likewise DL’s contribution. It is so helpful knowing that you are out there with useful advice and help.

[PMRpro Ambassador in reply to Lizwillis]

How long is it since the procedure? It takes quite a while to recover from that sort of insult - especially at an intermediate sort of dose.

[Lizwillis in reply to PMRpro]

you are so kind to ask. It was done at the end of September last year as I had excruciating abdominal pain. I had been on 10 mgs prior to that weekend but bumped it up to 20 as I could barely walk. On admittance my CRP was over 300 but then went up to over 400. They did a scan and saw what was going on. A ruptured abscess on my diverticular colon ( I had lots of the beastly pouches for a while). So, had to wait a couple of days but it was done . They removed lots of all sorts which I was pleased about . However Iwas kept in for over three weks during which time I lost over two stone. I thought I might have lost about half a stone and was shocked when I got home to discover it was this much. Needless to say quite a bit if that has gone back on since resuming eating normally but also, eating sweet things. Not good for my steroid induced diabetes !

So, like you say, quite an insult to the poor body and a lot to get used to not being helped by PMR getting worse asa result of all of this. I am gradually coming to terms with it all but actually in fact going out anywhere is often really hard and not doable, at the moment. I am determined to only try and do things I want to do if I am able. Often things have to get cancelled. Also, an awful lot of time is taken up with medical appointments which are in themselves, quite draining. I am sure there are lots of us on the forum in similar circumstances. This is why I feel that this forum is so incredibly kind and helpful and supportive and why I value your support andDLs .

Again ,we do not need unkindness in any form as we have already rather a lot to try and deal with.

[tempusfugi in reply to Lizwillis]

Reminds me of someone I know who said 'I should not let my illness rule my life'😡 As you say, just because you look ok doesn't mean you are, but when you're crawling upstairs or getting up at 0530 hrs in tears because of pain, PMR does rule your life. Hope the person I mention never feels like PMR sufferers do...

[Lizwillis in reply to tempusfugi]

indeed! As you say, you hope nobody else feels like some of us do. Unfortunately some of us on here get a large dollop of PMR and some are a bit better off and are able to do more . It seems it’s luck of the draw.

[Griggser in reply to Lizwillis]

Hi Liz, thanks for your reply. The nerve pain from the PHN is still ongoing and I’m, probably stupidly, trying to tough it out. I had been feeling so much better in myself after weaning off the Amitripyline. I’m almost off the Pregablin but the pain in a round my eye as well as going over the right hand side of my scalp is increasing. The doc has referred me to the pain clinic up here and I’m hoping that they might offer acupuncture or something I haven’t tried before.

I had also been very dizzy and stumbling around as well as continually tired. The dizziness has gone and I feel less tired. I hope they get you sorted soon.

[Lizwillis in reply to Griggser]

oh Griggser, I am so sorry you now have the pain returning. You are being brave trying to get by without the drugs. Especially since you obviously have been feeling so much better. I do hope the pain clinic can help you and soon. This you have had forfar too long.

Good to hear your dizziness and tiredness and stumbling around has gone. Fingers crossed mine will too, very soon.

[DorsetLady PMRGCAuk volunteer]

Hi, nice to hear from you again….

GP has obviously looked PMR, which in one way is good, but as you says, didn’t listen enough, which isn’t!😳

[PMRpro Ambassador]

So the post-herpetic neuralgia is improving??? That is such good news,

[Griggser in reply to PMRpro]

unfortunately since coming off the two drugs the pain level has increased. Trying to tough it out until I get to see the pain clinic😫

[PMRpro Ambassador in reply to Griggser]

Boo - how long is that?

[Griggser in reply to PMRpro]

I would say as long as a piece of string or twice as long as half of it! Tried to book online as requested and no appointments available.