Methotrexate and Other Things

Bones, joints and muscles
1

Hi to all that remember me, it's been a long time again, but I am still here and looking in regularly. I have been stirred to action because someone has mentioned metho and that is something I do know about.

First, the house move is over and done with and we are very happy in our new home. It was not an easy time as I was hospitalized just a month before the moving date (I will go into that shortly) and was just plain terrified of overdoing it all and undoing all the good work which the consultant and the hospital had done.

The new home is not properly sorted yet (we are currently having a patio built) but the end of this month should see all the work done and then we can start enjoying the fun bits.

To get to the hospital bit - I started Methotrexate early last November with the intention of getting me off steroids asap, I was then on 5mg daily and had stuck there. As luck would have it, in January I got a severe chest infection and they upped the steroids to 30mg daily as they usually do. That was my downfall.

I had the most awful struggle trying to get the Pred down again - I've struggled before but this was something else! I made it fairly easily to 20mg and there I stuck.........every time I went lower within a few days (even doing it slowly) I had the kind of flare that made me feel 'unprintable'.

I did manage to get down to the 15 simply by putting up with it but I was barely functioning. Over Easter and the week following I was feeling very ill and knowing that I already had an appointment with the consultant for 19th April I put the dose back up to the 20 just so that I could cope with some of the packing and sorting out for a few days.

At my appointment - well, she took one look at me and had me admitted on the spot which completely flabbergasted me. I was given a steroid injection the day I was admitted to help me over the tapering and by the time I got home I was already down to 12.5 daily - no, I couldn't believe it, either. I think also those days when I couldn'tdo anything at home and the consequent release from the stress and tension (from guilt,I think) also helped.

This is the beginning of the 4th week in our new home and I am now down to 7.5 daily and about to begin a very slow taper to 5mg (again - I shall cheer when I get there).

I am now also on the maximum dose of Metho (25mg weekly) and during this last two months in spite of the reductions in Pred I have not had one flare-up even though we were having very exciting days. I have had a few 'off' days of course, but mainly due to tiredness.

It is one of the few drugs with which I have had minimal side effects - nothing worth speaking about - and if it is necessary to minimise or end the steroids completely, well, if you are offered it, it is definitely worth a try.

The side effects recorded are frightening - but then so are those given for Prednisolone (and I have always felt that I have had about 70 of the 82 recorded for Pred). Metho also has the advantage that it can be stopped and started at will if the need arises, no tapering or slow reductions required. As that is so, I don't think anyone can turn down the chance totry it - if you don't try, you will never know!

I hope that now the dust has died down (literally) I should be able to get back to regular postings again, but I have said that before so I am not holding my breath!

(Ooooh, Mrs O - I don't think you are receiving my emails)

Regards

Nefret

2

Hi Nefret!

Lovely to hear from you again, glad the move is done (if not dusted!) and things are looking up.

Why did she admit you and why the injection - just very nosey and really interested (honest). I have wondered in the past if an injection might be a good way of dealing with an acute exacerbation rather than upping the oral steroids which must take longer to act especially on something specific. I'm stuck at 13.5 per 2 days and even a 0.5mg reduction is enough to put me into a state that means I can do very little which seems really bizarre - the hand and wrist pain is back within a day and steadily gets worse.

Let's face it - if we took too much notice of the side-effects we'd not take anything at all. Though I did draw the line at the suggestion of sulphasalazine when the evidence really did suggest PMR (especially the total response of almost all symptoms to steroids in 24 hours) and I was about to move here - no sun with sulphasalazine! Yeah, right!!

Looking forward to a further update,

EileenH

3

Hi there Nefret and welcome back to the forum. Now I have received your e-mail and I've given myself a slap on the hand for not replying but I have been thinking about you lots and will reply tomorrow. Life has been quite hectic. Will just say that it's great to hear that things are looking up for you at last - good luck and better days have moved into that new home with you. Love, MrsOxxx

4

Hi Nefret

Pleased to hear you have now moved but sorry to hear you had such an awful time Great to have a Consultant who listens and takes action

I know 2 people on Methtrx who have both had quite bad side effects liver heart etc so have never wanted to try it

I was stuck around 4 to 5 ( should have been 5) before Xmas and going nowhere but then I had a flare up in Jan and ended up on 15 !! so trying to get below 5 never occurred Now on 7.5

If I have to try Methtrx I will have to think about it as I havent had many side effects with steroids

Hope you continue to improve

Best wishes Mrs G

5

Hi Eileen - bizarre is the word for it!

The general opinion was that I was in fact having a reaction to the Pred, not getting flares or withdrawal symptoms.

I accepted that as the symptoms I was complaining about were really odd, like nothing I had experienced previously. I was constantly freezing cold and it took ages for me to warm up, I would still be like a block of ice even surrounded by hottie bottles and with two thick duvets over me. The cold increased the pain to mega proportions. I was in a great deal of pain anyway and it included joint pain and swelling. While I've had the joint pain off and on for some time, I had never had swollen joints before that.

I knew that I was already in the frame both for Sjogrens and Reynauds and to start with just thought it was those - or one or the other - emerging.

I think I was given the injection as that is a much smaller dose to get the same effect as the oral Pred - had they put the oral dose up to where I would have been comfortable it would have been sky high. Also of course, it lasts much longer although I'm told that the results are very individual (just like PMR!)

She said nothing to me about this at the time except that she was going to admit me but I can understand that as I was in no fit state to really take anything in. All she said was that we had to get over the hump and get the Pred down as quickly as possible and it would be easier to do if I was admitted.

Whatever, it worked. Within 24 hours I was much more comfortable and was able to go down to 15 the next day and then 12.5 2 days later with absolutely no problems at all.

I think now that I have Raynauds. Since then my feet are almost constantly cold even in a heatwave and - don't laugh - my nose is iced! My hands do not seem to be included at the moment, but the Polyarthritis is very bad in those and they are always burning. (If they do get cold, the pain is really bad). Really, it's no big deal as long as I am wearing my favourite clogs and I am looking forward with interest and some apprehension to my first appointment with a new Rheumatologist in this area when I propose first to confuse and then to confound!

If you can think of anything that might be useful to me or if you have any comments please do post.

Nefret

6

Well, so far, so good...........am dropping to 5mg/7.5mg daily as from tomorrow..........shoulders more painful, but that might be the additional exercise I am getting outdoors attending to the garden. Whatever, am going to give it a go for this week at least.

Nefret

7

Hi Nefret

Oh well done you - but do try not to overdo it with your new garden especially while starting your new reduction. The forecast is for it to warm up again this week so hopefully that will help to improve your shoulders. Have you got a local Community Day Centre in your new surroundings - if so I wonder if they might have a physio like the one I'm attending at the moment. The massage has worked wonders on my shoulder blade pain and will start on the arm pain this week. Take care.

MrsO