Do not know whether methotrexate would be better ... - PMRGCAuk

PMRGCAuk

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Do not know whether methotrexate would be better for me than prednisolone

jennifer15 profile image
13 Replies

Hello,

I am new to this post. I am 70 years of age and experienced severe headaches in May2017 and then from July to September had pain in my jaw, difficulty swallowing, raised temporal arteries. I was eventually diagnosed with GCA and started on 60mg prednisolone. It has now been gradually reduced to 12.5 mg.

I have a history of oesophageal reflux since2001 but the medication (ranitidine and Omeprazole) led to collagenous colitis in 2014 so I had to discontinue the medication. In 2017 I was diagnosed with hiatus hernia.

I also have a heart murmur after having myocarditis in 1981 and have had raised cholesterol for many years.

My side effects from prednisolone are feeling bloated, put on weight, puffy eyes, BP up, palpitations, dizziness when lying down, generally fuzzy and difficult to get going in the morning, tire easily, occasional stomach discomfort after taking medications.

I am seeing my rheumatologist in March for my 6month follow up. My querie is should I ask if I could be prescribed Methtrexate instead of prednisolone or combine them? I do not want to damage my cardiovascular system more than necessary and do not want to irritate my stomach problems as I have worked for years to improve them. Do you think that the alternative steroids may be less dangerous for me and cause less damage to my heart and stomach?

Thank you so much for any advice.Jenny

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13 Replies
SheffieldJane profile image
SheffieldJane

As everyone will race to tell you, there is no substitute for Prednisalone. Methotrexate is used to varied effect to help reduce your Pred dose more quickly. Certainly discuss all your current symptoms and pre- existing conditions though. When I was on Omeprazole I was taken to hospital with a terrifying Oesophageal Spasm. Since then I have taken Pred after a bowl of Greek Yoghurt and honey with no ill effects or digestive symptoms at all. If I were you I would put up with the horrible Pred side effects because the consequences of untreated GCA are so severe. A diet that is very low in Carbs and sugar really helps the weight gain and bloating symptoms. You maybe prescribed a beta blocker for the palpitations and the whirligigs as I called the dizziness. These symptoms reduce as you taper down your Pred dose. The fuzzy head and difficult to get going in the morning is still with me, that’s why I am still in my pyjamas and am writing to you rather than something that sounds like getting going. I like slow unwinding mornings and get cross if I have to meet a deadline, these days.

jennifer15 profile image
jennifer15 in reply toSheffieldJane

Thank you so very much, that is very helpful

Kindest regards, Jenny

jayboy05 profile image
jayboy05 in reply toSheffieldJane

Good morning Sheffieldjane. I have had PMR for over two years and am on 10mgs after a couple of flares while reducing! My doctor retired without even having the courtesy to tell me and my Rhumey is more than useless, the Other doctors only have a scant knowledge of PMR ......so at the moment I am so down.....I have searched the Internet for a Rhumey in the North West who specialises in PMR and found Dr. Sarah Mackie and looking back over your post find that she is your excellent consultant .....the problem is the information I down loaded about Dr. Mackie are out of date and the medical secretary at my Doc's isn't sure which hospital she is based at in your area. Could you possibly let me know which hospital she works from, and any other information that may help to get me an appointment. I am so sorry to be intrusive however I am rather desperate as I have so many questions that need answering and only a doctor with specialist knowledge can help.

Thanks so much in anticipation.

Maura (Jayboy 5)

PMRpro profile image
PMRproAmbassador in reply tojayboy05

I believe she is working out of Otley hospital now but her email at the university should still work (s.l.mackie@leeds.ac.uk) - she does her research from the Welcome building at St James's. that is the email address I communicate with her on and there is nothing to stop your doctor using it.

SheffieldJane profile image
SheffieldJane in reply tojayboy05

I see her at Otley jayboy, those sort of questions are never intrusive. We are all here to help each other and everybody agrees that Dr Mackie is great and genuinely interested and expert in our conditions.

SheffieldJane profile image
SheffieldJane in reply tojayboy05

Hi Maura,

Dr Mackie is based at Wharfedale Hospital, Newall Carr Road, Otley, LS21 2LY

Referral and booking service -TEL 0113 2064353

Good luck!

piglette profile image
piglette

Hi Jennifer, as Sheffieldjane says Methotrexate is a DMARD (disease modifying anti-rheumatic drug) and is used to help taper the pred. Some people seem to think it works and others reckon it doesn’t, so there is still no final conclusion even with the research that has been done. You will still need to take the pred, Methotrexate is not a steroid and is not a substitute for pred.

jennifer15 profile image
jennifer15 in reply topiglette

Thank you very much for your help.

Kind regards, Jenny

PMRpro profile image
PMRproAmbassador

If you have GCA then methotrexate does NOT replace the pred. It MAY allow you to get to a lower dose of pred but there are no guarantees and it has its own set of side effects. Amongst them are nausea and vomiting which is experienced by 20 - 65% of patients and also peptic ulcers.

The side effects you describe with pred are common to most of us although many of us have managed the weight gain by cutting carbs drastically. Omeprazole has a reputation for causing side effects!

I'm not sure what makes you think steroids are damaging to your cardiovascular system - in GCA they are protecting it from the effects of the vascular inflammation which can extend far beyond the arteries in the head.

jennifer15 profile image
jennifer15 in reply toPMRpro

That is very helpful, thank you very much. Jenny

jennifer15 profile image
jennifer15

Thank you very much indeed. Good to have your advice. Jenny

Sho-Sho profile image
Sho-Sho

I have total sympathy with your comments on the side effects of steroids. I started on 60mg for GCA and it was not until I got to about 12mg that they stopped. As has been said Methotrexate is not a substitute for steroids it is a steroid sparer taken to try and make it easier to reduce. However Professor Dasgupta, the lead expert in GCA, told me when I consulted him that it was not effective unless taken at the start of your treatment. I took it for four months, nine months after I started pred having been prescribed it by my Rheumatologist, then stopped as I felt so ill on it. You have come down very quickly from your original dose, I was told you are lucky to be at 10mg after one year, and then again if you have no flares a very slow reduction in the second year. I am now at 9mg after 19 months, so I would say you are doing amazingly well and the horrid, horrid side effects do go (I thought they never would but they will), although the acute fatigue is a different matter - so I wouldn't have thought you need methotrexate.

Hope this helps.

Sho Sho

jennifer15 profile image
jennifer15 in reply toSho-Sho

Thank you that is very helpful. Seems that I am better of sticking with

Prednisolone. Thank you for saying I am doing well, that is a real help and encouragement.

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