Methotrexate

[Valentina1]

Well its been over 7 months and I have now seen a GP experienced in PMR and other matters. I am to go on Methotrexate slowly over a 6 week period Then I can begin reducing steroids again . He listened. Does anyone have any pointers experiences etc., they feel they could share with me please.

[Hidden]

Hi Valentina

I have written a couple of Posts in Methotrexate, so l will forward them to you.

Kind Regards

MrsN

[Valentina1 in reply to Hidden]

Thank you Mrs Nails.

[Hidden in reply to Valentina1]

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 Pred 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 Doctors 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

UPDATE

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.

July 2019

Well l am back on 12.5mg Prednisolone & waiting to see a Rheumatologist on the NHS next week with a view to recommence Methotrexate...........

Tips For New Users of Methotrexate

healthunlocked.com/pmrgcauk...

[Valentina1 in reply to Hidden]

Dear Mrs Nails A Great help I have printed it so I can pin it up. It cant be worse than the affects of steroids on me which make me feel as if I am on a merry go round all the time. I know I cannot stop them but can reduce when the methotrexate has reached its limit.

I have to wait for education by a nurse before I can start. I hope you have a good day.

[Valentina1 in reply to Hidden]

Mrs Nails I am so sorry you have had so much to contend with I just don't know how you managed it. Just amazing puts my struggles into perspective. Yours tips are so helpful and easy to follow thank goodness I will when I start be able to see them on my door.

[Valentina1 in reply to Hidden]

I forgot to say I now have prednisolone dependant diabetes and its rather high at 13 Am not much over weight never smoked but it doesn't help. Also anti coagulation. Its what all these meds give me that upsets me. You are very brave and logical.

[Hidden in reply to Valentina1]

Yes, sometimes we have to look at the bigger picture & hopefully the MXT helps you to reduce the Pred thus helping ease the diabetes.

Hidden is a great source of knowledge on Diet for Diabetes so l will direct her over to you for a chat......

We all have our Specialist Subjects 😉 & are happy to help.

MrsN 🌷🌷🌷

[Hidden in reply to Valentina1]

Hi Valentina, the steroid induced diabetes will start to be controlled as you are able to reduce. What dose of pred are you on at the moment?

The main thing you can do is lower the total amount if carbs you eat. Like pred, carbs make your blood sugar spike until eventually together they up your hba1c to the double figures you find yourself in at the moment. By reducing carbs you limit the number and longevity of those spikes. When the spikes get lower and shorter the over measure of blood sugar (hba1c) will come down. It's easier to spend a week adding carbs up that you consume and then reduce by 25% of that figure for a week or two, then take another 25% of original number off again. You are looking to go around 40g a day or under. Have a look at this website for ideas of low carb meals.

dietdoctor.com/low-carb

This site as a list of carb contents... The main lists are down near the bottom of the page.

ditchthecarbs.com/guide-to-...

[Hidden in reply to Hidden]

Thanks Poop 🌷

[Valentina1 in reply to Hidden]

Thank you Poopadoop. I did see a diabetic nurse last Friday I had had to ask for this. She was sufficiently concerned and listened to me also asked if she had my permission to do a review of my case. I do eat a lot of veggies but cannot take milk etc., some cheese ok but enjoy unfortunately bread Homemade often which may help as its brown. Carbs seem to feature rather high for me but I do have chicken fish and red meat. I shall print off your information so I can pin it up

[Hidden]

Any questions at any time, you can drop me a PM ~ I’m hoping to go back on it, it has already been discussed with the Consultant when l had a Private Consultation but it needs to be managed by the NHS Rheumatology Team, hence the delay!

Good Luck 🍀

[PMRpro Ambassador]

A GP is able to put you on methotrexate? I didn't know they could.

I hope it does work for you and without adverse effects. It does help some people to get to a lower dose but it is not a certainty so be prepared for that.

[piglette in reply to PMRpro]

They are allowed to prescribe Methotrexate, but they do not normally initiate the prescribing. They tend not to get involved with cancer chemotherapy though.

[Hidden in reply to piglette]

Methotrexate is classed as an Amber Drug, initially prescribed by a Consultant with GP able to prescribe repeats.

That’s why l’m still waiting to see the Rheumatologist on NHS as GP can’t set it up despite it being the plan the Rheumatologist made when l saw him Privately as l’ll need a Chest X-ray & Blood Work every month.

[PMRpro Ambassador in reply to Hidden]

That's what I thought.

[Hidden]

In 8 months of being on MTX, I managed to reduce my pred from 10mg to 5mg.. last 3 days trying 2.5mg of pred..

I felt sick, and so moved to the MTX injections, much much better.... but did still get waves of nausea.

As I said in my post this morning, my liver wasn't doing great, so today I'm trying leflunomide. I really hope it helps you x

[PMRpro Ambassador in reply to Hidden]

In my experience that is a really good result, often it is just a couple of mg difference. Shame about the liver effects though.

[Valentina1]

This appointment was not with my own GP but a man who has a special interest in PMR as I understand. It took a long time and a different GP to be offered an appointment I had thought it would be with a Consultant. The plan does seem to comply with information gratefully received from yourselves.

I have to wait to be educated by a nurse Chest Xray Bloods Dexascan and then 6 week appointments in the same clinic with bloods every 2weeks. I admit to finding this all quite difficult with the other problems I have attached. Fortunataly I will have A letter detailing all of this and I shall use the prints I have made of advice given me particularly Mrs. Nails.

[Hidden in reply to Valentina1]

There are some GP’s who have a ‘Special Interest’ & are maybe only a ‘GP’ 2 days a week & practice their ‘Special Interest’ at the Hospital or Surgery.

The appointment with the Nurse will be very helpful, you can ask questions & they will have a helpline if you have any questions.

Have a Good Day 🌷

Keep Cool

MrsN 🌷

[Ronnie101]

Thanks for this post. I've just relented and started on methotroxate, having decided that after over 4 year of pred, and, according to the consultant, developing pred induced osteoporosis with a collapsed vertebrae, cataracts, and pre diabetes.

Ironically the leaflet which comes with methotrexate is very scary and seems worse than the steroid one, but docs and consultants don't see it that way.

We're all different and react differently to these drugs. Good luck!

[Valentina1]

Hello Ronnie 101 We both now have this discovery road. I can tell you my daughter in law in Germany is a pharmacist and she tells me hardly anyone in her pharmacy is on Preds. Methotrexate dominates by far. For me it cann ot possibly be worse than preds are. Every day and some worse I feel I am on a roundabout within half an hour of taking them Besides the tiredness its the diabetes it has given me I am told the latter will decrease when I can reduce the steroids.

Please let me know how you are I don't start until I am educated by a nurse Xrayed and more bloods. So its snails pace.

[Marijo1951]

I started taking MTX at the end of 2017 when I couldn't reduce below 25 mg pred without having a serious flare of GCA. I haven't so far had any serious side effects and I think it probably has helped me to reduce my pred dose (currently 7 mg). I have a blood test every month and so far the results are fine.

[Hidden in reply to Marijo1951]

This is good news & thank you for your input on Methotrexate, a similar story to mine, l got from 18mg to 7.5mg before l had to stop for Surgery & Chemo but after 12months l went back on it again without hesitation.

[Marijo1951 in reply to Hidden]

I'm not one to take medication if I feel wary about it, or think the possible side effects mean it isn't worth the risk, for example I won't take bisphosphonates. I was a little scared about being prescribed a drug that's used for treating cancer, but read as much as I could find and realised that my dose (originally 10 mg per week, then adjusted to 15 mg per week) is tiny compared to the dosages used for cancer patients.

[Hidden in reply to Marijo1951]

I think that’s one of the scary aspects but the dose is so much lower.

I’ve had full dose Chemo & there’s no comparison l can assure you of that.

Keep Cool in this hot weather!

MrsN

[Marijo1951 in reply to Hidden]

Just getting ready for a bus ride up to Kenwood. There's a bench I know under a spreading tree with a lovely view of Hampstead Heath. Half an hour sat there will do me the power of good.

[Hidden in reply to Marijo1951]

Sounds Perfect! Enjoy! x