After aborted taper while on holiday in Australia in December 2024 - (60 - 50 - 40) which put me horizontal from about 6am to 3pm each day, a doctor in Brisbane recommended going back to 50mg and holding until I was back in NZ and could see a rheumatologist at my local hospital. An appointment took several weeks to come through - leaving me with more questions which they can’t answer until the next available clinic at the end of April. Yes - we have a desperately under resourced public health system here. I used an alternate day dosing plan over several weeks to get to 40mg - still feeling like something the cat dragged in, but I got there 😉 I switched to a private rheumatologist who was happy with me taking smaller steps to get down to 20mg at which point we’d work out another plan. Given my response to Prednisone in general (I have a full basket of adverse side effects, and my response to tapering) she prescribed Methotrexate.
I’ve now taken three doses. First week at 10mg I almost felt like my old self for a couple of days. Second week at 10mg I was back to feeling blah. This week at 20mg I was reduced to the horizontal with extremely unhappy stomach - felt like I’d swallowed a couple of bricks and very uncomfortable pain in top right quadrant of abdomen.
I’ve read many of the posts related to Methotrexate and it seems the jury is divided - it has worked for some but not others, some have had no negative side effects while others have had a very bad time. Clearly it’s very person dependent.
I’m now wondering if I jumped onto the Methotrexate ship too quickly. Maybe with a much much slower tapering rate I could get down from where I am (currently 35 mg) without putting yet another medication into my system. As a result of ASE’s from just the Prednisone I’m now taking medication for hypertension, type 2 diabetes, osteopenia, gastric issues, and a prophylactic antibiotic as my immune system has collapsed.
After only three doses of MTX - can I just stop? Or - does that need a taper? I am seeing the rheumatologist in a fortnight so I could wait for that discussion. Would those two weeks make it harder to get back off the MTX?
Or - will my body’s response to MTX settle with time and I should just carry on taking it?
Homai o whakaaro - please share your thoughts (te reo Māori)
Ngā mihi
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Sunburst001
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Hi. I was on a low dose of pred (7mg) when methotrexate was suggested. Reluctantly I tried it - 15mg to start. The side effects were countered by taking folic acid daily Part from the day it took the methotrexate. After 11 months without being able to reduce the pred my rheumy increased the metho to 20mg. I've been on that since Nov 24 and I'm now at 6.5 mg pred. So I don't think the metho has helped at all and I've decided to stop taking it. I (and PMRpro on here) feel I've given it a good innings!!! I understand that you can stop it without tapering and I haven't yet had any adverse effects 😀. Good luck with your decision.
As you say there’s a lot of info re MTX- but for all it takes time to work… up to 12 weeks is often quoted - so you need to be more patient. Yes you can just stop it, doesn’t need to be tapered like many drugs.
Would just add ,one of the most respected rheumatologist has indicated he doesn’t think that MTX is that much help in GCA….
On the subject of reducing Pred, as we have said many times, too fast a taper just ends up causing flares. Unfortunately patients are still being pushed down that path.
Have you actually told us what side effects you have from Pred? Many can be easily managed.
Thanks DL. Yes - I was aware of the 8-12 week period for MTX to reach it's full efficacy, so maybe I just need to grin and bear it.......and be patient.
This is my current list of ASE's.......gastric issues much worse now after upping to 20g MTX.
• Sleep disruption – improved slightly once down to 40mg
• Moonface – started after a week of treatment. Very pronounced. Also shows in neck shoulders and upper back.
• Elevated blood pressure and heart rate – now treated by Metoprolol. Diagnosed mid January at my request.
• Steroid induced Type 2 diabetes. Diagnosed mid February at my request. Prescribed Metformin
• Gastric disturbance – treated with Omeprazole. Very distended and bloated upper abdomen. Presses against diaphragm. Frequently very uncomfortable. Occasional sudden onset sharp pain in upper abdomen – resolves with diluted baking soda. Very windy.
• Bowels. Very windy. Frequent loose bowel motions.
• Reduced bone density – treated with Fosamax
• Weight gain. From 63kg at beginning of treatment (early November 2024) to 72kg by mid March. Ie 9kg over 4.5 months. No obvious change in diet – eat basically keto with 30g 50g cargs per day.
• Irritable and short tempered. This is very out of character. First noticed when starting to taper in early December 24.
• Dry Eyes – diagnosed by Optometrist, plus inflammation in eyes. Eyes blurry. Right eye easily tires and often has muscle tics. Treated with drops for inflammation and for reduced quality and quantity of tears. Feeling of pressure around eyes – not intraocular.
• Vision – vision has reduced significantly since November 2024. New glasses required for reading and computer work. Correction for distance has needed to be added for the first time – March 2025/
• Bladder irritated – feels like UTI but it’s not. Frequent urge to urinate. Increased frequency of urination at night. Possibly due to onset of diabetes. Occasional stress incontinence – this is new for me. Night time urge has decreased after starting Metformin. Urinary flow has reduced to a trickly after starting Methotrexate.
• Cotton wool head
• Reduced kidney function (as per eGFR results)
• Immunity down – sinus infections in December. Increased CRP in that period.
• Slow to combat infection – 2 x 10 days antibiotics in December 2024
• Breathlessness – from late November then worsening. Has improved since starting Metoprolol
• Muscle weakness – legs – from late November then worsening. Continues.
• Muscle weakness increased – thighs and possibly pelvic floor?
• Reduced grip strength – related to muscle weakness?
• Poor co-ordination – frequently dropping things, knocking things over, spilling liquids when pouring etc. I leave a trail of destruction behind me.
• “Senior moments on steroids”, for example:
i. Poor concentration
ii. Sometimes unable to find words for things or people’s names
iii. My performance when in “autopilot” mode is frequently dodgy.
iv. Increased error rate when doing mundane tasks at work
• Bruising easily
• Slow healing
• Dry mouth and unpleasant taste. Not resolved by drinking water.
• Sinus congestion. Particularly on RHS. This is not new for me – possibly due to deviated nasal septum and formation of the RH sinus. Have had a previous diagnosis of possible sinus headache/migraine. This is inhibiting my breathing at night and disrupting sleep. Have tried a nasal dilator – possibly some success. Also do sinus rinse in morning and before bed.
• Teeth sensitivity – upper and lower jaw. Have been checked by dentist – no teeth or gum issues. Using Sensodyne. Take Panadol after cold meals. Will be revisiting dentist this week.
• More obvious response to insect bites. Usually there might be a small red spot on the skin – more recently a bit will develop into a red patch about 15 mm in diameter with small red blisters.
Weight gain - plenty of info in FAQ, but cutting carbs drastically is the only way - PMRpro and SnazzyD will testify to that.
Skin issues - very common - Pred thins the skin so you need to take extra care, using emollients and/or light clothing for protection
Infections are more likely as Pred is suppressing the immune system - to control your u underlying diseases...some suffer more than other - others hardly at all - pot luck..
I know it's a long list, but virtually all will improve as your Pred decreases, and those that need to be addressed have/ or will be.
If you have specific ones that are causing great stress then ask as a separate post [in each instance] and you will get others experiences/remedies.
Thank you - especially for the encouragement that "these too will pass"! It's also encouraging to know that these are "par for the course" - this forum has been so helpful in showing me that I'm in some very good company on this journey. I forgot to mention the hot flushes and hair loss - both of which were a nuisance as I sat at the hairdressers this afternoon.😉
I have had my eyes checked twice by optometrists and they assure me my eye health is ok - no sign of glaucoma, cataracts etc. The quality of my vision has dropped, but that could be due to the stress of the last 5-6 months.
The moonface and bullfrog neck really both me. Call it vanity. However I find it so discouraging every time I have to see myself in a mirror. I'm almost unrecognizable. I'm certainly looking forward to a time when that might start to resolve. Is there any general wisdom around when that might happen - what dosage of Prednisone?
Moonface & neck, I well remember that… and there were certain necklaces I couldn't wear..
TBH, can’t really remember when they returned to normal, but neck/throat reasonably quickly..face a bit longer but then some of that is my natural shape anyway.
There are some photos I’d rather not look at… but at least I’m still able to look at them thanks to Pred. 😊
Yep, quite normal. Had those too but it isn’t forever remember. I also had them and worse on chemo but it somehow felt more acceptable because of the fear of dying of cancer. GCA just doesn’t have the same ring to it. This is even worse when one doesn’t have a nice scan or definitive proof of its existence so it can feel like taking a punt. It just doesn’t feel like there is much of a positive trade off especially if you feel like your life has been taken away by this.
Thank you Snazzy. Cancer as well? You've really been doing hard things. Yes - GCA doesn't have the same ring. Life in the PredniZone has completely overtaken any thoughts of the original issue. My brief period with GCA only brought minor/moderate discomfort, It was the difficulty with eating that finally sealed the deal and led to the diagnosis. I still don't think I've really taken that seriously.
You may blame the pred for a lot of those adverse effects but I can assure you that many of them can be experienced as a result of PMR/GCA without any pred. GCA patients tend not to have long enough to realise it because the risks are too high to delay pred, but I had 5 years of PMR with some GCA signs for a while without it being diagnosed and not being treated and experienced all except moonface, easy bruising, reduced renal function and reduced bone density - I was already slightly osteopeneic before ever starting pred and that is quite usual at our age - in that time. I was extremely irritable and snappy, concentration was poor, I dropped so much.
It is a natural reaction to blame pred - it is not ALWAYS the pred, it can be the illness and some things are just a result of aging. Had you had a dexascan before starting pred to know that the reduction in bone density is definitely that?
A range of the ones you mention are diet related - 30-50g carbs may not be enough to avoid them as SnazzyD and I both had to get to about 20g carbs to avoid weight gain. This is a whole new world - and the control you obviously want is now out of your hands. Stop overthinking and learn to accept things are rather different - it is a hard lesson and almost everyone struggles with it, but it does make life with GCA and pred less agonising.
So wise - thank you. Now that I've found this wonderful tribe who've shared stories that I can relate to, I am no longer desperately searching for answers as I have been. Yes - the control is out of my hands - which I have found so very frustrating. My natural instinct is to put some plan in place to deal with an issue - eg high blood pressure, diabetes, weight gain etc. But - limited options there.
I had hoped to be able to manage the diabetes through strict diet control. You mention 20g carbs - that's a real clamp down. Are you able to share more about what you might have eaten in a typical day to achieve that? I'm a tea drinker - each cup with milk has 2.6g carbs (you can take the girl out of Yorkshire, but you can't take the Yorkshire out of the girl). I have tried to like herbal or fruit teas, but sadly our relationships have been short lived. I could just drop back to hot water and lemon.
I'm balancing two objectives - controlling BGL and getting rid of the weight gain. I have noticed a pattern of BGL during the day which I think you and SnazzyD also picked up on. BGL rises around about breakfast time, reaches a peak after lunch and then it's all downhill - no matter what I eat in the evening (usually a pile of steamed green vege and some protein such as salmon) I've tested this a few ways by eating that dinner meal throughout the day - and also by carb loading in the evening. Still get the same graceful curve - clearly Prednisone has it's hand on the BGL lever. So - it's not just what you eat, it's when you eat it that matters. A typical day is above. The little green apples are food or drink. First one is a cup of tea. Second one is two eggs. Not much carb there but the BGL is on its way up.......
To come back to the weight issue, I'm going to try a way of eating that I used back in the day when I was a gym bunny which helped me drop off the kgs - this was eating 5 smaller meals throughout the day. So no increase in intake, just changing the timing. I'm never going to be an intermittent faster on 2 meals a day.
You aren't potentially overthinking - you still are! Stop panicking about it all, just live and deal with things as they arrive. It may take a while to settle down, you CAN lose weight even after gaining it with pred but it isn't usually a speedy process.
I drink tea, lots of it, I drank tea and still lost weight, I ate a lot of salad and above ground veggies, meat, fish, eggs, cheese. I almost never eat breakfast, often don't eat at all before early to mid afternoon - I suppose that it conforms to TRE with a 16/8 split and TRE probably does help a lot. I eat gelato - I live in Italy - but it is a treat. When losing weight - no bread, no pasta, no rice etc. No processed foods. Strangely, living in Italy does make that relatively easy, even eating out, but I don't deprive myself because that makes you resentful.
Beware of 5 small meals a day - unless there are no carbs, Your aim is to smooth the blood sugar spikes, you can't control the ones due to pred, you CAN control the dietary additions.
Laughing here. There must be some sweet spot between overthinking and doing some self directed research and reading to gain better understanding of what's going on so that I can pull whatever levers are available. My multiple small meals hasn't produced spikes - I think I'm taking in so few carbs that I get a fairly graceful rise and fall during each day. I'd just like to see that stay in the green zone. There was however, the almond croissant incident.............
The other advantage for me of the multiple small meals is that it keeps my stomach relatively full and occupied. It's at its worst in terms of gnawing ache and pain when it's empty. I had been snacking on very boring crackers to give it something to think about, but that's probably contributed to the weight gain. Will see how I go....
Don't think I will achieve your 20g carbs though. My 5 cups of tea/milk give me about 13g carb before I even touch real food. 😉
You can just stop Methotrexate; it isn’t like Pred. It also needs some weeks to bed in.
As to whether you should have started or not is unanswerable now due to the confused Pred picture. Reading briefly through your previous posts it has been a frantic time with fast reductions and fluctuating doses at an early stage in your illness.
If one is the type to use the analytical part of the brain by default, it can be a nightmare when on high doses, especially when cast adrift with little information and/or subjected to nut job reducing plans. One can end up like a spinning top of over thinking with high dose Pred fanning the flames. The nightmare starts when there is confusion between 1. side effects 2. withdrawal and 3. flare symptoms. You did ask why alternating doses matter at one point. Pred affects every part of you and operating conditions change with each dose. My experience was even a drop of 5mg from 40mg was enough to upend those working conditions until a new environment was adjusted to. It works great on paper but in reality it can feel dreadful for some.
What thinkers tend not to like is loss of control of input data about their body. If you get all of the 3 symptom causes of the apocalypse as outlined above it’s chaos. Two big factors are being unprepared for what high dose Pred actually feels like and trying to grasp at previous normality that is used as a yard stick to being ok. Doctors don’t help by giving one the impression that you go about normal life, so when it doesn’t feel like that it feels terribly wrong. Trying to stick to old routines like working can make it feel worse. What you needed was a slower, smoother reduction (cleaner data) and knowing it’s ok to feel downright weird, fuddled, weak, wild, foggy yet sharp, the list goes on. Trying to get off Pred in order to feel better doesn’t work because it invites in all of the 3.
You could continue with patience with MTX but reduce slowly. The doc is likely to see the MTX as giving you the green flag to carry on down fast. Be aware this may backfire at some point particularly if MTX isn’t effective for you.
Or you reduce smoothly from an effective dose of Pred starting point, accepting you will not feel normal and this will feel better but not yet.
Last question, what do you mean by immune system collapse?
Oh my goodness - you have me totally nailed! Laughing. Yes - absolutely the analyst trying to make sense of what's happening. My mother has often said I think too much - she may well be right on this topic. I will need to read and ponder on that a few times. Thank you.
The rheumatologist referred to blood tests which indicated that my immunity has dropped. Unfortunately I don't have access to those lab results - she commented that my IgG had been falling and was now very low. As a result she has prescribed a daily antibiotic (Co-trimoxazole) as a prophylactic and recommend two pneumococcal vaccinations - Prevenar and Pneumovax. I haven't followed through as yet with the vaccinations - these are not funded in NZ and will cost about $NZ400 for the two of them. That's about UK pounds 175. Still thinking about that.....
I have had PMR for 20 years or so, been on pred for 16 and Actemra for over 3 years. I honestly can't say my immunity is any worse despite the medication. I still get one humdinger of a cold a year - just getting over this year's while travelling across Europe to the UK and visiting the daughters. I haven't knowingly had Covid, don't take abx except when I need to - in fact, probably less than pre-pred. I develop UTIs but not any worse than before - it is a structural problem, if that is taken care of it is fine. I stopped calcium carbonate supplements as they caused grit in the urine and that caused cystitis symptoms - not always infections. PMR caused the irritable bladder symptoms, not pred.
It can really feel like one is in the cross hairs regards infection. It still amazes me how we don’t get more infections. I even nursed the family through proper flu when on about 35mg and didn’t get ill. It was mostly my own bacteria that caused issues rather than acquired infection but even then one can help. For urine, large fluid intake and D-mannose. Skin breaks were covered in Iodine dressings and I wore gloves for anything dirty without fail. I also avoided crowds. Antibiotics aren’t necessarily a free pass not to take care. In the UK it doesn’t seem to be that prophylactic antibiotics are routinely used.
Not knowing the blood numbers, it might be worth asking if adding the MTX will further make matters worse and if the risk/benefit balance is clear. Also, given how much these high doses and MTX affect the immune system ask if is it worth delaying the vaccines until you are lower so that they are more effective.
Thank you PMRpro and SnazzyD for your thoughts about immunity. I will talk this through with the rheumatologist when we next meet in a couple of weeks. I'm not wild about taking a daily antibiotic - or having vaccinations. I've been fortunate previously to miss most things that go around - really can't remember the last time I had any abx prior to entering the PredniZone. I'm also not exposed to large numbers of people or young children so the chances of picking something up are reasonable small. Fingers crossed.
oh my, you gave me dizzy just reading about your tapering. Alternating day Pred at those doses makes no sense and would have anyone feeling terrible. I completely understand your desire to get lower in Pred, but GCA charts its own course and we have to learn patience.
I found that putting my energies toward managing Pred side effects and sticking to a slow steady taper had better pay off. There’s lots of great advice on this site for managing Pred side effects. Sorry, but with GCA it’s a longer journey that we just can’t shorten. Wishing you the best!
Thank you for those wise words. Learning heaps since I found this forum - no longer blundering around in the dark - some lights beginning to come on. "Patience" is a word that many people are offering to me! I do remember when my son was about 3 and we were waiting for a train, I suggested that patience was a virtue. He responded that patience was a waste of time. Still makes me smile. He's now 32. 😀
when I started methotrexate I was given 5mg to start with then after a blood test and all was good I upped to ten,then another blood test and I stayed at ten mg for another month.
This was then increased to fifteen mg same another month blood tests,then up to twenty mg and another blood test after a month.
Then every month for three months blood tests, when my rheumatologist was happy with the results I went to having blood tests every three months, I seem to be lucky with mtx but I know it does not suit everyone.
I don’t know why you started on such a high dose at the beginning but, it seems a lot to me.
The most weeks I have missed mtx is six when I had to have antibiotics,then started at twenty with blood tests done every two weeks.
Thank you. It's interesting how much variation there is in the way medications are prescribed for these issues. Your introduction to MTX was clearly much slower than mine. I am having fortnightly blood tests since starting which is reassuring. I have also made sure I get a copy so I can satisfy my own curiosity about how things are going.
Have you got your mtx book to record the results of your blood tests I was told to keep this book on me at all times so if you have to go into hospital they can see it.
When I go for my blood test I give the nurse the book when she has got the results she fills my book in and lets me know it’s ready to collect.
We don't operate with an MTX book here. We are forunate that there is a national system that records all lab tests and results - and this can be accessed by medical practitioners throughout the country. This is everyone from specialists, hospital staff, osteopaths, chiropracters, physiotherapists etc. It works extremely well as any medical person you consult can access your lab test history right up to the current day.
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methotrexate 
Methotrexate 
Explain methotrexate please. 
Sensible GP, Rheumatologist not so much…
Tapering From 24mg
