Advice needed please

Hi all,

I would love to be able to report that MTX is a great drug and has done wonders for me.....but I am now into my 11th week of taking it, supposed to be back down to 10mgs a day of pred at this stage, but my hands were so swollen and stiff this morning that I had to take a total of 20 (I know....should not over medicate...but was desperate) before I could even shower or dress.

My rheumy did warn me that it doesn't work for everyone, but I thought I might get at least some small improvement :roll: .

I am not due another appointment until the end of August, but will be phoning him on Tuesday morning ( tomorrow is a bank holiday here) for an earlier date as my knuckles are still quite swollen and I don't want to risk permanent joint damage.

I really do not see any point in continuing to take the MTX when there has been no relief after giving it a fair go,so it will probably be onto yet another drug....he suggested a weekly injection of Embrel as the next option, so will wait to see what happens :wink:

The only time I have been fully pain free in the last month was when I was temporarily back to 40mgs pred, but obvoiusly staying on that high a dose is not a long term option, so for now its back to the drawing board :roll:

Hope the rest of you are faring better.

Love,

Pauline.

Hi Pauline

Sorry to hear Mtx isnt working for you I am hoping it isnt suggested for me just because I know people who have taken it for other illnesses and they have had bad side effects

It does sound as if you need further investigation as you need such high doses of steroids to feel well

I had got to 2mg now up to 4mg and seem to have good and bad days Some days I feel really stiff in the mornings particuarly wrists but other days not too bad Not doing anything till I see the Dr in 2 weeks I was thinking in May when I was on 2mg I might be off of all this by the time 3 years are up in Oct but........ No chance !!

Best wishes

Mrs G

MrsG

I know this will sound funny, but if you were to be on anything up to 5mg per day for the rest of your life, it would not really matter.

Stay comfortable, if when you reduce and you wait five days, and the pain does not go away, you need to up it back to where you were comfortable and try again.

Have you tried Ragnar's method? The percentage drop gets higher the lower the dose.

Good Luck.

Hello Mrs K

Yes I had thought it might come to staying on 5mg but going to 2 mg it all seemed to be going well I was going even slower than Ragnars method !!

Each time I have a blip it seem to coincide with a throat infection so its annoying but I will be patient for a while and stay on 4mg and play it by ear

Thanks

Mrs G

Mrs G - IS it a throat infection? Does it come before you reduce or start up a day or two (or more) after you start the reduction? I was fine at 17.5mg every 2 days but at 17mg various things reappeared from the pre-dx days - and one was the sore throat and phlegm. Mostly it would take about a week to start up and would go away when I went back up. It all depends which arteries are involved. Just a thought.

And as MrsK says - is it really the end of the world if you remain at somewhere at or about 5mg for a few years and feel really well? It's very unlikely to cause any real longterm problems at that level.

EileenH :D

Hi Eileen

It is a throat infection and after that I have the problems It has happened most times i fly Not last time I used a throat protector as well as the nasal drops Paranoic Me No !!!!!

I asked italian b in law as he is ENT and he said I need a throat swab and then specific antibiotic So I have decided that if it comes back I will go back to the Dr straight away

I am prepared for 5mg permantly but I will still have a go in getting off them again I was back to my normal self between my 2 bouts of PMR so fingers crossed it might happen again

Mrs G

Hi there -

Going back to Mrs K's comment that it would not matter if one has to stay on 5 mg of pred forever or a long time - as long as one felt well.

I had got down to 5 mg and on trying 4.5 mg (after a slow reduction over 3 weeks) - symptoms of PMR started to reappear and as I was about to go on a walking (not too strenuous) holiday in the Lake District I upped the dose to 6 mg for the week of the holiday - all well and good. I then dropped to 5.5 mg the next week, then back to 5 mg the following week. I stayed there and all was well and when I saw my rheumatologist soon after she said that she would be happy for me to stay on 5 mg for a long time - which confirms what Mrs K said. After more discussion she said stay on it for at least 3 months then maybe try 4.5 mg again, but be prepared to go back to 5 mg if it didn't work. I see her again in 6 months. (I have had PMR for 20 months)

Hilary

purplecat

What a wise rheumy, the 5mg is obviously holding the pmr at a level, where it does not really bother you and at 20 months in, that is great news. With a bit of luck and a fair wind and no rushing at all, you may find that the 2-3 years works for you.

Good Luck and I do so hope you are one of the 2-3 years people.

Hello Hilary

That's great advice from your rheumy - oh that all the GPs were as clued up! :wink: I definitely agree with the 3 months stay at each of these low doses as it's a much larger drop overall for the body to get used to than at the higher doses. Glad to hear you are doing so well after just 20 months - keep it up!

MrsO

Hi everyone, had my appointment today for bloods etc. Saw my doctors nurse. I sometimes find that it is easier to talk to a nurse rather than a doctor..I asked her about what she thought about what my Rheumy said about going on MTX. She said that seeing as I am down to 2mgs a day I'd be mad to even consider it!!! :?

Had the works today..bloods for esr,cholestrol (last time it was up in the moon at 6.4..never that high before), folates and Iron levels, blood pressure, weight (lost a load of weight in the last couple of weeks..not sure if thats a good thing.. down to 59 kilos),Vitamin B12 shot and a nice chat.:D

Bye for now, Pat

Hi Pat

I bet you left the appointment with the nurse today feeling really reassured, especially after the nice chat\" and her comments on MTX. The blood tests leave you feeling like a pin cushion don't they - I had 3 phials taken recently.

Steroids can push cholesterol readings up so hopefully now that you have come down on the dose the latest results will be better - my last reading was 6.0. They don't worry too much at this level as long as the ratio of HDL (good fats) to LDL (bad fats) is well balanced.

The weight loss could just be because you have come down so low on the steroid dose now - it sounds like a good weight anyway - wish I was 59 kilos! :lol:

Good luck with the results.

MrsO

59kg - what weight is that? You lucky thing!!!!

6.4 - that's not in the moon :wink: nowhere near double figures yet!!!

Delighted to hear your nurse is brighter than your doc - they are almost always better than docs at talking about things, part of their training.

Good luck,

Eileen

59kg? The weight of last year's turkey I think :lol:

Ladies,

Know you will probably hate me for it.....but I am down to 48kgs (I'm 5' 4) and am now officially classed as underweight and would dearly love to put on a few pounds as my clothes are all hanging off of me.

Hands and knees are still giving me major problems so I have got a cancellation appointment with my rheumy tomorrow morning. The last time I was with him he suggested trying \"Enbrel\" if the MTX was not working...which after 11 weeks on it does not seem to be.

Have been doing a bit of research and although it seems to give some relief to RA sufferers, some poor folk have developed Multiple sclherosis as a \"side effect\" :roll: :shock: .Stomach problems and hair loss also seem to feature with alarming regularity :cry:

Will see what he has to say, but can't say I'm relishing the thought of playing Russian Roulette with yet another drug :wink:

All I want, if its not too much to ask, is to be able to arrrange to do something in the mornings, as opposed to having to wait until at least noon to feel well enough for even a trip to buy the newspaper :oops:

Thankfully, I have the prospect of my new home in Spain to look forward to, otherwise I think I would go stark raving mad with the frustration that my non-compliant body is forcing upon me at present. My shoulders have started to ache again aswell, so I don't know what is PMR and what is RA....if I was a gambling person I would say probably 50/50

Just to make my day even better, our cable TV went off......phoned the support line & the girl said \"are you sure it is plugged in?\"

For those of you with a delicate nature, I will not repeat my response :oops: :roll: :wink: :x .suffice it to say, she was EXTREMELY lucky that she was at the other end of a phone line, or I would not have been responsible for my actions :!:

Sorry folks...rant over for tonight.

Love to all,

Pauline

Hi Pauline,

Good luck with the Rheumy for tomorrow. Not much I can do to help although I do have a few (quite a few!) pounds I could let you have if that helps :lol:

Take care and let us know how you get on tomorrow.

Love from Lizzie xxx