hello friends, I have not been on here since Christmas, which came and went.
I have now got down to 25 mg Pred reducing 2.5 mg. BUT temporal head pain is still there every day. My rheumy has suggested moving onto methotrexate as Pred hasn't got me pain free and I am seeing the specialist nurse tomorrow to talk about it. Not sure what the process is and whether its a drug to take instead of Pred and what the withdrawal will be like or if I take both.... Had a flu and pneumonia jab.
The info leaflet says it take 3 - 12 wks to notice the benefits.
I take paracetamol when I cant stand the pain and have to work, take some times up to 6 - 8 a day. I also do a 15 min meditation/ relax which helps.
I am trying to be bold like my lovely cat Llewani (sadly no longer with me) on my motor bike as he wasnt afraid of anything but its a bit daunting. Every time I reduce i get horrible withdrawal for about 3 - 4 days and have to try to time it around work.
Any help as always gratefully received. I want to go armed with all the right questions.
Warm wishes always. xx
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Fieldofdreams
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MTX is an autoimmune supressant drug and is used in other AI illnesses - with GCA or PMR the aim is to supplement the steroids so you can lower that dose more quickly.
Not sure how effective it is, sure you will get feedback, but it certainly brings another load of side effects with it, and your liver needs to be monitored regularly.
As for your withdrawal symptoms, using a slow taper such as attached (others are available) may help -
Can I ask a question, when were you diagnosed and how much pred started on?
Do you work full-time?
Withdrawal symptoms are classic if you take an immediate drop in pred, instead of following a tapering plan. You can have two free if you email pmrgcafightersne@gmail.com Subject heading 'Reduction plans'. Also put reduction plans in the search box, top right hand side of this page.
Metho is a steroid sparing agent. Intially developed for use in cancer and is the best treatment for Late Onset Rheumatiod Arthritis. As far as I am able to say, it does not help with GCA at all. It can sometimes help with PMR.
Dear Jinasc, i was started on 60 mg and reduced quickly by 10 mg to get to 30 mg within 6 weeks. I am now following a tapering plan and thank you for your advice. I am hoping Metho helps as I cant get below 30 mg without pain. yes, I am working. i am self employed and have quite a busy and stressful schedule which also involves travel - I love it but have to temper my enthusiasm and time to myself. FOD
Methotrexate won't replace pred for GCA (or PMR if it comes to that), they are used in tandem. It may allow you to reduce with fewer problems (or it may not) and it may allow you to get to a lower dose but there are no guarantees. It comes with its own set of side effects, affecting the liver if you are unlucky and liver function must be monitored closely.
I am a bit concerned at the quantity of paracetamol you are taking - 4x 500mg per day is the maximum dose for paracetamol and even that can cause liver problems within a few months. The line between therapeutic dose and overdose is sometimes very narrow. It is said that methotrexate and paracetamol do not interact - but both may affect the liver.
Were you never pain free even at the starting dose?
Hi PMRpro, could you please confirm the max dose of paracetamol. I have a packet of 500mg paracetamol tablets. The dosage on the pack reads 2 tablets up to 4 times a day.
"The recommended paracetamol dosing for adults and children 12 years and over is 500 to 1000 mg every four to six hours as necessary, with a maximum of 4000 mg in any 24 hour period."
So yes, 2x 500mg 4 times a day - and even that may cause liver problems over a long period so the odd blood test is a good idea.
Hello, I’ll just say that I’d be very wary of talking Methotrexate plus that much Paracetamol. Some people still get liver problems even with the maximum but allowed dose of Paracetamol, so pushing it with two ‘liver heavy’ drugs might be unwise. Paracetamol doesn’t usually do anything for GCA/PMR pain anyway.
Hi Fieldofdreams
I’m going to copy you an old post of mine with a little update, hope it helps
MrsN
My experience with Methotrexate:~
I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.
Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone & could barely walk without getting out of breath, my BP was through the roof & my resting pulse rate was 100+ so there was no choice but to try it!
I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.
At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.
I came down 1mg per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.
For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg
Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.
That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.
It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.
Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other people have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.
Best Wishes & Good Luck 🍀
Mrs N
PS
August 2018
Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.
January 2019
Following my Fibroscan there has not been any other damage to my Liver, all my specific liver blood tests are normal, Cholesterol Level Normal & No signs of diabetes.
Comment
I can honestly say I’m missing the impact Methotrexate had as my PMR is flaring at the moment & in the past l’ve been steady on 5mg Pred & Methotrexate 20mg
If you have a specific questions I’ll be happy to answer if l can.
My Liver issues were picked up quickly before had any symptoms that’s why they do the monthly blood test.
I can only give my own experience of MTX. I started on 60 mg pred per day on 31st July 2017. On two occasions I had bad flares of GCA symptoms when trying to reduce to 25 mg. The second time, just after Christmas 2017, I was prescribed MTX . The initial dose was 10 mg per week, plus one tablet per week of folic acid. This was increased a couple of months later to 15 mg per week plus folic acid on 5 days per week. I go for a monthly blood test to make sure my liver is okay. I've now been taking MTX for just over 13 months without any terrible side effects, and I feel it probably has helped me to reduce pred as I haven't had a sign of a flare since.
Just added the MTX and Folic Acid to my Prednisone to hopefully help with my taper. Read of the toxic and possible side effects but have a plan with my dr. so hope for the best. Just found this site so will follow you and those who are already using.
I had 25mg methotrexate added to my prednisolone within 3 months of my GCA being confirmed and it did help me lower my pred dose. Got down to 5mg of pred after a year but had a major flare and had to go back again. 9 months later another flare but not as bad and this time Leflumenoid was added into the mix. Since that time (end April 2018)I have steadily reduced at the rate of 0.5 mg per month but to a complex daily schedule of my own devising and am now down to 3mg.
You might be interested to know that Dr Sarah Mackie at Leeds University is at the moment putting together a research proposal on the effect of Methotrexate on relapsing PMR with a view to get some funding for a two year study. I'm sure she would welcome any comments or experiences from forum members which you can pass on via me (treasurer@pmrgca.org.uk)
That’s interesting Retail Monkey about Sarah’s Research Proposal, you’ll have to let us know when there are more details. I’ve been on Methotrexate twice, it was currently stoped because of my ALT Results but l am most certainly missing the benefits of MXT
I'm where you are....At 25 with prednisone and started the MTX weekly. 3weeks ago 4 tabs of 2.5mg, last week 6 tabs and this week 8tabs so will be on 20mg weekly. Added Folic Acid also. I have read the side effects and the possible liver involvement but can only hope it allows my continual taper of Prednisone to run smoothly. I have the worst of the side effects from the Prednisone so have decided to take my chances with lots of prayers, regular blood draws and a positive attitude. I will follow your posts and hope the best for you also. Just found this site..GCA is a diagnosis truly from hell!!
Hello and welcome to the site, it has been an absolute lifeline to me. It would be good to link up and see how you are getting on as it sounds like we are similar in our medications and what we are trying to do to get off Fred. I will send you a message so that we follow the protocol of the site with all very best wishes
If you don't mind others "hearing" - this is the sort of thing that it is fine to talk about online in public. If you are using mtx while reducing your pred, it really is helpful for others to hear about your experiences.
Hi PMRpro, ah,many thanks. I am happy for others to 'hear'. By the way, in your experience is it ok to take your vitamin supplements (B12 and 6 and E and D) at the same time as Pred?
Don't think there is anything to be bothered about - except, are you taking the vit D as part of a calcium/vit D supplement? In that case, calcium should be taken at least a couple of hours away from pred.
Thank you so much PMRpro. I take calcium at night, Pred and Vit D and the rest (vit C, B12, E and B6) in the morning. I think they still absorb ok. Alk best x
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