Further to difficulty tapering post

[PatB1948]

I posted about a month ago about my difficulty in tapering and I have ended up on 17.5mg after trying to reduce to 12.5mg as I hadn't been on the bigger dose for more than a few days. However, the pain was still bad, hence going up again to 15mg and then 17.5mg. I am feeling much better with just a bit of pain but It's liveable with. I went to my GP this week and as I have an appointment to see rheumie on 27th Dec, stay on the 17.5mg and see what rheumie says. Doctor thinks he will want mr to go on Methotrexate but I am not sure as I have diverticular disease and this will almost certainly upset my tummy. What are your thoughts and/or experience of this drug. Any advice would appreciated.

[PMRpro Ambassador]

I would say no mtx until you have tried reducing using a sensible tapering plan, You can't reduce until your body is ready and you can't reduce in too big steps.

healthunlocked.com/pmrgcauk...

I tried mtx to make my lovely rheumy happy on the understanding that if I couldn't cope I'd stop. I didn't have the usual adverse effects such as nausea but within a couple of days my hair fell out in clumps. I developed muscle and joint aches and bruising. Most of my bad effects were what are usually claimed to be pred adverse effects - which in years I had never experienced with prednisolone or prednisone although I had with methyl pred. I was constantly hungry and gained a kilo in 4 weeks! It still hasn't gone.

I know it may work for some - it makes a big difference for MrsNails - but she has developed liver problems. A sensible approach to tapering will often work without adding mtx to the mix. It has its own layer of adverse effects and some doctors are concerned about doubling up the immune system suppression and putting patients at a greated risk of infection.

[PatB1948 in reply to PMRpro]

Thanks, PMRpro, the mtx side effects sound even worse than I thought especially the weight gain. GP referred me to the NHS weight management programme as I am diabetic and have put on two stones since my PMR diagnosis and I was quite a big lady previously, I think I would feel better all round if I lost some weight. I have managed to get on this programme and due to start 4th Feb. It is a low carb regime and lasts 24 weeks and also has a physiotherapist for exercise input. I don't what to say to the rheumie if he wants me to go on mtx, I must admit it does not sound like it is a very nice drug.

[PMRpro Ambassador in reply to PatB1948]

What's the matter with "No"? Ask to be allowed to try without first. Weight gain IS unusual - but I have come across others with the same problem!

[PatB1948 in reply to PMRpro]

Yes, you are right. I am like you, very straight talking so I will do as you suggest. Thanks for advice.

[Yellowbluebell in reply to PatB1948]

Nothing wrong with a bit of straight talking!!Good luck. YBB

[SnazzyD in reply to PatB1948]

Low carb is the way to go and you can point to it as a reason to give you more time. I would also ask why you weren’t offered this from the outset.

[PatB1948 in reply to SnazzyD]

Thanks for your advice.

[SnazzyD]

Just my opinion, but it seems a shame to bring in an extra drug with known toxicity when you haven’t been allowed to reduce at a slow pace without ups and downs from too large steps.

Don’t forget that this is your body and it should be your decision what happens to it. Remember nobody has a crystal ball or your skin so I’d ask for the reasoning and evidence behind any proposal as too much is at stake.

[PatB1948 in reply to SnazzyD]

Thank you, SnazzyD, good advice, I will say no to the rheumie about mtx and try an even slower taper although I had been doing the DSNS, I always seem to get stuck at 11.5/12mg Pred.

[SnazzyD in reply to PatB1948]

When I’ve had to start my case for reducing ‘too slowly’ I’ve pointed to the fact that I’ve not been diabetic and had no weight gain due to diet control and asked them what exactly they were worried about. It was usually nothing specific and words like addiction were bandied about. So I suggest you ask what clinical indications specific to YOU that they are worried about. There may be some that will make you decide to go with their idea, you never know.

[PMRpro Ambassador in reply to PatB1948]

Then get to 12mg first - some people do. Then renegotiate. How long have you been on pred?

[PatB1948 in reply to PMRpro]

I have been on Pred since April, 2017.

[PMRpro Ambassador in reply to PatB1948]

It took me over 4 years to get below 10mg - mind you, despite having been lower in the meantime, I'm back above 10mg again.

[SheffieldJane in reply to SnazzyD]

My thoughts exactly. I kicked it into the long grass for these reasons.

Why they just won’t let us do this in a quiet meditative way, listening to our bodies, trusting them, reducing gently and permanently. Nobody chooses this and yet we are made to feel culpable. ( tapering).

[Louisa1840 in reply to SheffieldJane]

Such sensible comments Jane. Why can't we be allowed to use our intuition and listen to our bodies as you suggest? We should not feel bullied by the medicos. This is a complex disease and seems very individualistic in the manifestations we all experience......

I am at 10 mgs ATM & think I will stay here for some time and hope the stiffness goes. Think I might rename my user handle "Manky Penguin"!!!

[Blearyeyed]

Mrs Nails is taking a break at the moment but if you put her name in the members search and go to her profile you will see her posts on MTX and the replies from people with various experiences.

On her Methotrexate post , if you look at the right hand side of the screen you will see a section called Related Posts which will give you more peoples posts on MTX and more replies and links.

In relation to Methotrexate and Diverticulitis , you can put both words into search and you will get a list ( hopefully ) of posts from all different forums which may have answers specific to people with Diverticulitis and whether they could use MTX .

You could also find a forum which includes Diverticulitis as a main symptom of the Disease and you could ask the same question on those forums too , to get a much bigger group of experiences to help you make your choices.

Take care

[PatB1948 in reply to Blearyeyed]

Thank you, I will do that.