Hello, I hope I have posted in the right place on the forum now.
To cut a long story short, I have just been diagnosed with Spondyloarthropathy through private insurance after the public health care could not find what was wrong with me for well over a year, conditions: ankylosing spondylitis / psoriatic arthritis but my doctor said I have like a mixture of all of them as I have many symptoms, and am suffering from many pains (back, sides, foot, buttocks, breathing, finger swelling, nail coloration etc) and have finally found good doctors through private insurance who have found this (I am in Spain) I also have some sacroilitis.
The first Rheumatology doctor prescribed me with prednisone 10mg for 2 weeks, (2 weeks 10mg, 1 week 5mg) I felt nothing at all, and I had 1 week not taking these before visiting my new Rheumatology doctor who is helping me allot more, she is suggesting I go on the bio treatment but first wants to try these first steps.
I was prescribed the 15 Methotrexate injection and inacid retard 75mg (1 day and night) yesterday and have not taken Methotrexate yet.
I started on the inacid last night and was fine, but after the second dose in the morning of the inacid, after 1-2 hours, I started to feel terrible, very dizzy and could not breathe, and was almost passing out, I was very bad and went to the hospital.
The hospital did checks on my heart, and lungs, while the results came back fine they got me an appointment set up with a Pulmonologist to find out why I am having breathing problems/chest pains. (I have listed all my symptoms below) and the doctor there talked to my Rheumatology department and prescribed me to take prednisone 30mg, and to go back to the hospital tomorrow to have the Methotrexate injection.
But after reading, is this the right way to go about things? I have heard prednisone 30mg & Methotrexate is quite high? I have not started any effective treatment yet but I am worried about serious side effects after already suffering very bad effects from the inacid retard 75mg.
What do you recommend I do? Go back to 10mg prednisone with the Methotrexate? Or just try the Methotrexate alone? (I have the folic acid day after pill also and stomach protection)
I also forget to mention I was once taking mirtazapine for a few years and it caused a bit of fatty liver, so my ALT levels are often a little raised, is this something we should be taking care of and how do we get around potential liver damage taking these meds.
The doctor at the hospital also said I need the injection and to get started as it is the one that's going to really help fight my inflammation I have and do the most work, and Prednisone is mostly for the pain.
What bad luck to be allergic to anti-inflammatories. Make sure this is clearly shown in your medical notes, for the future. It is a very different group of drug from prednisone or methotrexate so having a bad reaction to one doesn’t mean you will have a bad reaction to another.
30mg pred is not that high. And it is common to take it alongside MTX (methotrexate) when first diagnosed as the MTX can take months to work. Once you are on MTX you will be monitored through regular blood tests so any problems with you liver will be picked up. But don’t drink alcohol! Certainly not to start with.
Thank you for your reply, it could be possible I am allergic to certain anti-inflammatories?
Okay that sounds reassuring, I am going to follow their orders and see how it goes, 30mg pred just taking after breakfast, and then this afternoon I have to got the hospital for the MTX injection.
I will be sure not to drink alcohol.
Thanks for your help, I'll let everyone know how things go and put my story in my profile (most up already just not complete)
If you drink Lite Beer, you will get less alcohol, and if you tray Non Alcoholic Beer, for example, you may be content with that. Also see my other reply about Alcohol.
I confirmed that I drink beer for the taste not for the inebriation since I found the non Alcoholic beer very satisfying. You need to try a bunch until you find the one that suits your taste.
I asked my Rheumatologist about the alcohol, and he said that was for the very much higher dosages of MTX when used for cancer chemotherapy. I asked because the drug notes included from the pharmacy talk about alcohol. In any case I mostly drink Non Alcoholic Beer with meals. Like the light beers the NAlk has less calories
These days the general advice is that you can have some alcohol with MTX - keeping below the guideline amounts and spreading throughout the week not in one go.
However, when you start MTX is is also often advised that you stop drinking alcohol completely for a while until you have had a few blood tests to check that your liver is tolerating the MTX. It is a strong drug, and if you want to give your body the best possible chance of responding well then you don’ want alcohol adding more pressure on the liver. I stopped for three months, and then slowly introduced a bit. Without problem.
Thank you, just another note, I am going for my MTX Injection later, do you guys do them yourself or do some of you prefer a nurse/doctor to do them? As I will need them weekly, maybe it is better I learn myself?
The nurse did my 1st injection and watched me do the 2nd and since then I've done them myself at home. It's a very easy pre-loaded pen so just hold it against the skin, push the plunger and wait for 5 seconds before putting it in the sharps bin. I was told to use thighs or tummy and alternate sides each week and I use my thighs as I have more padding there 😉
I do them (and my biologic) myself. Very easy, and allows me to choose when and where to inject. Drink lots of water, and don’ be alarmed if the first one makes you feel a bit woozy. For most people the side effects wear off pretty quickly.
(My sister is wildly allergic to most anti-inflammatories - a big nuisance)
Thanks both for the help and reassurances. I love to drink allot of water so not a problem I've had a dry mouth problems for years if I don't drink loads of water, maybe part of the conditions?
Hi I have ankylosing spondylitis, and use a biologic as well as methotrexate. Methotrexate hasn’t been shown to help spinal symptoms, but is excellent for peripheral symptoms. So it has helped my hands, feet, knees, shoulders etc. I assume it is a short course of prednisolone your taking?. It’s not a long term solution. I had steroids for another condition polymyalgia, where steroids were the only treatment. It has resulted in me developing adrenal insufficiency as my adrenal glands have atrophied. I now get ill with any good or bad stress, any infection or injury can cause a crisis. So I’m not a fan either n people using them when alternatives are available. Biologics are excellent for spinal pain, but unless your insurance pay for your private prescriptions, they cost around £1000 a month roughly depending which one your on.
The MTX takes a few months usually to kick in so the steroids will help initially. You can also continue with regular analgesics with these meds. Hope you get some relief soon.
Thank you for your reply, very good information, appreciated. The dose is for 30 days, and obviously I need to slowly lower the dose to get of it, and I am worried about the side effects, I am guessing this is why my doctor prescribed me the inacid retard? Less potential side effects? But I am intolerant to this, so been put on the prednisone, what alternatives are there? and what maximum time do you recommend to be on the prednisone for? (2-3 months?) as I don't want side effects, my body is being very sensitive and I already have a sensitive liver.
The costs of the bio is a worry, the insurance won't cover, but I'm looking to pay the secuirty here to go into the public health system again as I can get the bio treatment done here in the public hospital if I don't want to pay, but I have to wait, which in spain can be 2-3 months, so I think (if it goes well) stay on the MTX/Predisone, and when possible start the Bio for my spine? and see how things go in the meantime?
Unfortunately I don’t have the answer re how long to take prednisolone for. I took part in a study back in 2016, looking to see if they could identify which patients developed side effects. Unfortunately they found no way of identifying those at risk of more serious complications. I had a full body mri looking at all my muscles as part of the study, which found I had myopathy, wasting of the muscles. I hadn’t really noticed as it came on so gradually. Despite getting my dose down to 5mg I still have a degree of myopathy. I know of people with adrenal insufficiency from having a 4 week course or a couple of injections, whilst others take it for years and don’t get AI. It does cause osteoporosis, for this reason most rheumatologists don’t like steroids as it adds to the issues going on in your spine. Nsaids are really the only other option, here in the U.K. Etoricoxib is licensed for use in AS, it’s one tablet a day, and can give excellent results for many, some manage on this without needing to progress to biologics. I don’t know many who could afford the cost of a private biologic prescription, here in the U.K. the nhs pays it if you meet the criteria. Sorry I’ve probably given you more questions than answers. I’d definitely recommend trying Etoricoxib when you wean off the prednisolone, I had good results with it. Unfortunately I had a severe stroke, caused by an adrenal crisis, which is how I was diagnosed AI. So I am no longer allowed nsaids. Many are intolerant of 1 or 2, but tolerate others. Good luck
I'm sorry to hear about all your troubles and hope you are moving forward, I appreciate all the help allot, the Etoricoxib (Arcoxia here, it is also licensed here in Spain) i refused to take it, as I was reading a couple of studies where allot of people were suffering from strokes/heart attacks when taking it (one says 30% of the people taking it are more likely to have a chance of having a stroke/heart attack), and they are not giving it licensing in the USA as a result? And as I am struggling with my breathing and having pains in my chest/heart area I am a bit worried about taking anything that could effect my heart/lungs etc until they have done further checks there. Did you have your stroke before or after taking Etoricoxib ?
I think all the meds have their side effects sadly, its just finding what is best for us I guess, and hoping we can find the ones that work for us, thank you again for your kind help.
I had the stroke after being on Arcoxia for 18 months. However when I was admitted to A&E they took blood for cortisol levels, which when acutely ill should be over 1000, mine was undetectable. I was already scheduled to see an endocrinologist as I suspected I had adrenal issues. I had months of nausea, lightheadedness, weight loss, headaches and a sudden intolerance to stress. I worked as a ward sister on a trauma ward, and had a reputation for never stressing when things were tough. The 48hrs leading up to the stroke, I was constantly in tears worrying about everything. I even contacted my gp to request increasing my pred by 1mg as I was concerned. They refused telling me to wait till I seen the endo in 3 weeks. The next day I had the stroke. The endocrinologist confirmed the stroke was due to the cortisol and was surprised I’d managed as long as I had with all the symptoms I was displaying. My GP kept saying it was an ENT issue and had referred me to ENT. It was my own pushing that got the endocrinologist referral.
Sounds like an horrible experience but it also shows how strong you are! You was fighting beyond what was possible and are still here to tell your story, you was not your self but never gave up! I think we can all take inspiration from you to never give up and push to get the right treatment, I've seen so many bad doctors and had misdiagnoses, I've been suffering with this for years, and been told I've just got a muscle problem or it's in my mind, even one doctor told me it was due to stress and I need to go get help at the Psychiatrist! And I am like you, I am not a stressful person at all, very calm and relaxed over even the most difficult things.
But there are good doctors and specialists out there who will help us, we just have to push to find them sometimes.
I really hope you are over the worse of your issue's and are moving forward, and I really appreciate the communication and kindness.
Maureen, for someone who cared for others throughout you life (I hope I am right in thinking that you were a nursing sister) you are having a very tough time of things, which you don't deserve! I have no words to add but do care about what you are dealing with. Thank you for your very informative reply. Take care, Kx
Thank you for your kind words. I won’t lie I look back now and wonder how I managed to keep going, doing 12.5hr shifts. I was fortunate I had an excellent team who always looked out for me, doing the jobs I’d struggle with and I would do obs or something for them in return. I’m always a very positive person and don’t let anything get me down. There are always people worse off. Take care 🤗
I rather think it must have been your optimistic outlook that got you through Maureen. I'm sure your team thought a lot of you and you of them. Take care, God Bless, Knip, x
Hiya Jomox, welcome. Sorry you've needed to seek us out, but hopefully we'll be able to help now you have.
It's quite normal to be prescribed both a corticosteroid (prednisolone) & a DMARD (methotrexate) when first diagnosed. The intention being that the pred is a med which works quickly on inflammation & in turn pain, whilst waiting for the DMARD to take effect, which can take around 12 weeks or so. It's called a bridging method. When first diagnosed I was prescribed a DMARD (hydroxychloroquine), an steroid (deflazacort, a different corticosteroid, a short course like you) & 2 NSAIDS (celecoxib, taken daily) & nabumetone (to take if it was really necessary). I was also diagnosed in Spain. Unlike you I had a positive experience from the start, for two reasons really. One was that fortunately mine (in a one GP Centro de Salud in a very small village) was a GP with a Special Interest in Rheumatology so she recognised my symptoms straight away, & also I had typical seropositive presentation. I was officially diagnosed just over a fortnight later.
It's so unfortunate you reacted to the Inocid (indomethacin) but that doesn’t necessarily mean you will to all NSAIDs. It is a large group of meds so your Consultant may trial you you on a different one, it's quite normal to be coprescribed an NSAID with other meds in Rheumatology. She'll be wanting you to start the MTX asap as this is your lead med, & will need to be at least tried (possibly another DMARD too) prior to progressing to biologics. As you're probably aware biologics are very expensive, but the next step if conventional DMARDs don't bring your disease under control.
Re MTX injections. As I said I started on hydroxychloroquine but that stopped working after a year so I changed to MTX tablets. A year later a new Consultant increased my dose & changed me to injections. The nurse demonstrated how to use the pre-filled syringe & then watched me as I did my first one. After that I self administered, still am 12 years later, pre-filled pens now though. I saw my Consultant every 3 months so my drug monitoring bloods were done every 3 months too. That may vary though depending on your Consultant's preference.
I hope some of this helps & that you find it useful being here. We know first hand how it can be so you'll always find someone who will be able to relate to anything that comes your way! Bear in mind though we're like you, patients & not medical professionals, so unable to answer any direct medical questions, best to ask those of your Consultant or GP who know you. Otherwise, there's no question too silly, we've heard it all so ask away! It really helps I know, I didn't have the benefit of this site when I was first diagnosed, for some reason it wouldn't let me join, that or it was the rubbish signal where were living. 🤨☺️
Hi nomoreheels, interesting name, There have been so many long and very detailed posts about medication recently.
Some of the information is fascinating in an obsessive way other, is quite frankly very scary!
I was surprised by your advice to those on biologics to, if they had a problem, consult their GP. My GP and, the practice, refuse to talk about anything to do with biologics!
It is so unsettling but they are adamant! The topic is taboo.
If I have concerns or side effects I have to leave a message on the hospital rheumatology helpline. They try to phone back within five working days. You can only leave a message on tuesday wednesday or thursday. If I have worries or side effects ( and I do) waiting 5 days is enough to tip you into lala land. What has happened to basic humanity? This is , cannot be all due to covid .
We do go into quite some depth at times, you'll pick up that it's not so unusual for here really. I do hope the info I shared isn't scary! Not intended to be if perceived that way.
We've got a bit lost in translation re medical professionals. Much in the same way you'd consult your Cardiologist about any concerns which are heart related you'd do the same with your Rheumy & RD. Anything more general or medications known to the GP could usually be addressed with him/her. Those such as NSAIDs, corticosteroids, anything they would themselves prescribe in General Practice, without of the request of a Specialist.
Re-reading my reply, whilst I didn’t specifically suggest that biologics should be discussed with a GP I’ll add that as a specialist med a GP would have limited knowledge of them at best. So maybe not taboo so much as unable to be of help due to a lack of knowledge about such specialist meds, they wouldn't be in a position to discuss them. Unless a GPwSI they would have no reason to be knowledgable in them as they're only prescribed by our Rheumys. I hope that makes better sense.
Hi, hope you are not feeling to bad at present, I was on mtx and prednisone at the same time for a few years. Not I take mtx 20mg injections once a week along with folic acid 6 days out of 7 and omeprazone, a nurse can show you how to do your weekly injections at home, you must remember to always stay very well hydrated to ease side affects. It's nothing to worry about doing your injections it becomes like 2nd nature after a few times. Mtx does take a few weeks to kick in so stick with it, when you do them at home you will also need a purple sharps box to but the empty syringe in after. Good luck, stay safe and take care.
Hi, thanks for the reply, so far not really feeling anything but of course very early stages (i wake up with really bad pain on the bottom of my foot, with of course general stiffness/back pain) which generally gets better as day goes on, but goes on and off. But I am concerned about my breathing ,i really struggle with shortness of breath and catching my breath, and it seems to get worse when I lay down to go relax, and I often wake up "out of breath" I hope they will check me properly at my Pulmonologist appointment on the 4th July and I'll ill talk to my rheumatology doctor on Tuesday when I see her about everything. Is there anything particular I should be telling them to test? what kind of scans/tests should I have?
I had my first injection yesterday, it was in my bum (normal place or not?) I don't think the nurse knew where as he said I have to always have it there?
Thanks again everyone for the replies and information.
Ok course all these symptoms seem generally normal but has anyone had complications with breathing and their lungs/heart?
I have breathing problems, and hope at my Pulmonologist appointment on the 4th July they take this part seriously this time as it as always been ignored by the doctors, is it because the inflammation is spreading to that area of my body or could it be causing another problem that has not been checked?
I often have shortness of breathing, and struggle, worse when laying down or leaning back, for example last night I went to go bed and relax, I was calm, but then I just starting struggling to breath, and then could not catch my breath, so I went to another room, leaned forward (which seemed to improve my breathing) and after 15-20 minutes it started improving, it is on and off, but at night I sometimes wake up in like a "dead space?" I don't know what to call it, it feels like my body wakes me up as I need to breath, and I wake up feeling like I am about to die and can't take a deep breath, it feels terrible, but then I breath very slowly and start to come back round again...very weird. I often struggle a bit in the morning with this also when waking up.
Hi Jomox I just wanted to add that prednisolone is brilliant at reducing pain & the first time I had it at 20mg thought I could climb everest, it felt great to not be in pain & have so much energy but, I couldn't sleep & by day 3 was at my whits end, asked on here & the lovely people said to see if I could reduce it & ask if I could have some 1mg tablets so I could increase or decrease when needed, this really helped.
Just thought I'd mention it in case you found the same, if I have it now I start on 10mg for a day or 2 then increase to 15mg for a day or 2 & so on.
Thanks for the reply, how long did it start to work for you? I was on the 10mg for 1 week, and then 5mg 1 week before but felt nothing at all, now on day 2 of 30mg, not feeling anything yet or yesterday, i guess it takes a week or 2 to work?
Hi, I'm on Budesonide, which is a steroid, and also Methotrexate, and I take them both together. I can't have anti-inflammatories either, they started to give me pain in my chest after many years of using them. You are really suffering and my heart goes out to you. Methotrexate is a good drug if it works for you and the dose that used to be used for cancer patients was far higher than is prescribed for us in clinic today. In your shoes, I would take both together, as I do, but each to his own. I really hope that you get some relief soon, Kx
Sorry to hear your problems with anti-inflammatories, I've been thinking also that all the ones I've been given have just caused more problems for my body? especially chest area. Thanks for the reply, wish you the best for your health.
The prednisolone amount is not huge I took 100mcg daily for 3 months due to kidney issues but it does have side effects and can be hard to withdraw from so only try to take it for short periods as your doctor presides and then if its for a prolonged period, taper slowly down. I would just add that it sounds like a lot of issues and have you tried distraction as I'm not saying it is in your mind but the mind can play tricks on us and hearing sounds from your heart does sound odd. I stress I'm not saying its nothing and best to get it checked out but see if doing something to take your mind off the medical side of things does help. Coming to terms with any disease can take time and is often a huge shock as we are not invincible but it will not help if you worry yourself into a state of depression. Please talk to your GP and I don't know about alcohol and do wish you well.x
Thanks for the reply and information. I fully understand about the over worrying and mind playing tricks, but I am very calm and relaxed, with a peaceful mind, and just dealing with things, for a while, keeping busy. The heart noises I got my partner to confirm, they only come once I would say every 2 weeks, maybe for a day or two but they are strange, like "gurgling" and sometimes I hear a creaking sound, one doctor once told me its normal and probably acid reflux, but I am not sure as my breathing issue's continue even when I am fully at peace and not worried. Sometimes I can't even lay down and watch a movie as the breathing problems start when I am fully at peace and relaxed....I already thought before being diagnosed something was attacking my body (inflammation or something) but I just dealt with it, so it does not come as a surprise,
But I was also motivated for the doctors to actually do something (thus going to private insurance for a diagnosis) I've seen and dealt with allot of things and just see it as life, sometimes it's not easy but there are people worse off, I have 2 hands and can walk still (kind of) and got food on my table and a roof over my head, and just try to keep a positive mindset always, of course you also have to face the reality it maybe a life long thing, and you may never be able to do the things you were once able to (I love sports, working out etc and hope one day to get back to it, but I think swimming and riding a bike is a good thing to keep on and I seem to be able to manage this, at least being careful with some swimming strokes) thanks again.
I'm afraid I can only tell you things you may already know, but just in case:
1 The prednisone acts really fast to control inflammation such as joint pains from Rheumatoid Arthritis type of issues.
2 Prednisone is a fantastic drug, fast acting and cheap, but long term/high dosages have pose serious problems (kidney, eyes, etc.). Long term means years, but I'm somewhat uncertain about the high dose values. It's important to distinguish between starting doses which are large, and the everyday doses which are often much smaller.
In fact my doctor has prescribed a 6 Pak of Prednisone for a backache. This is a blister pack starting with 6 tablets (same strength each) to take on day 1 and then 1 less each following day until you run out. The pack gives instructions on how to distribute the pills each day. The idea is to start with a large dose and then reduce it quickly - hence the 6 day regimen.
MTX on the other hand may take 2 or more months to become effective. So the Prednisone controls the pain until the MTX has a chance to kick in. In my case the Prednisone strength was gradually cut back too fast and I had to backtrack for a couple of weeks and reduce the dosage more gradually, until the Prednisone was completely eliminated and the MTX was doing it's job. However, folic-acid ( or in my case Folate) has to be taken daily in order for the MTX to do it's job.
Thanks for the reply and information, I have been prescribed 30mg for a full 30 days, day 3 now and no change really, apart from awake till 5:15 last night but I had a project I was working on so it was no problem, I feel more tired probably due to the MTX? but it's on and off, sometimes energy (with the Prednisone) and then tired (due to the MTX early effects?) struggling with my breathing constantly, its weird, it feels like something is in my chest (with often shortness of breath)
I seen my doctor today for the second time visiting her, who seems great! She had everything prepared for me already for my insurance. (RX/Blood tests medicards/reports)
She wants me to start the biologic treatment straight away as this is the treatment that is going to treat my spine (The MTX will only help with my joints, skin, foot etc mostly she is explaining)
She has requested many blood tests, including to check what I may be allergic to, and an RX Torax for my lungs etc (to check for Asthma etc)
But there's a snag and a problem here, of course my insurance excludes the biologic treatment and won't cover me, the cheapest being 710,23 euro a month (Idacio) and the one she really wants me on is almost 7000 / month but she said it works really fast and recommends it highly (can't remember the name she said), so I need to get back in the public health care here in Spain to have the treatment in the public hospital.
Problem is I signed of the public health and now struggling to get an appointment for a long time to get back on, back and forth getting told I am not contacting the right place, or I have an appointment but it is the wrong one etc etc, I need a new card which should be simple, but she said I can get the cap card within 24 hours as I need urgent medical care and she is going to look into it for me as she knows how it is in Spain with dealing the bureaucracy.
So at the moment I am on still on the MTX/Prednisone but she has told me to only take 30mg Prednisone for 15 days and then 20 MG the next 15 etc, 10mg the last 15 days, and of course not really getting relived of pain yet.
Hi, just an update for everyone, generally feeling better, I think the pred is working and MTX slowly taking effect, my movement with my spine has improved and I can turn side to side almost normally without pain (Still can't sleep on my sides and general back pain of course still though) my foot still giving me problems for 70% of the hours in the day, but no pain on my fingers/hand really now, and the fungus on my left hand nails has completely gone, just some still on my right hand, along with swelling that seems to be slowly going down. Buttock pain on and off as per normal.
I am cycling to the beach every day, and swimming (taking it easy as some strokes not so easy) I think it is helping allot with my. And the cycling I don't get the foot pain, it is when I am walking (pressure)
I think I need a new matress, wake up with back pain/stiffness, figure out posture when sleeping.
I also got the newblood results back and my white cells are a mess, it looks like my immune system is very weak to infections etc, I'll post more about this later, (started lowering dose of the pred to 20mg today) got another appointment on the 13th, to talk about bio meds and what to do etc.
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Prednisolone Methotrexate MCTD...
Methotrexate and Prednisone
Increasing methotrexate and decreasing prednisone 
Prednisone
methotrexate
