Starting Methotrexate, Prednisone together? for - PMRGCAuk

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Starting Methotrexate, Prednisone together? for

Jomox profile image
21 Replies

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)

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)

Edit: 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.

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General Symptoms

(Possible spondylitis – grandfather and two uncles also diagnosed but don't have all these symptoms only the spine mostly)

Back, Ribs & Neck Pain:

Pain on the left side of my ribs originally

Pain went to my right side and then to my back

Pain in the neck for the last 4 weeks

I cannot sleep on my side without bad pains on my sides

I struggle to move my head side to side and can’t move side to side properly

Chest/Lungs:

Chest/heart pain sometimes

I have shortness of breath/breathing problems sometimes, worse when lying down

The breathing problems are sometimes very bad, I struggle

Weird sounds around my heart sometimes (creaking and like water noises)

Legs, Feet & Buttocks:

Pain on the sole of my left foot (worse after lying down or sitting, but also when walking and with pressure)

Alternating Buttock pain sometimes (Top of legs)

Hands/Nails:

Weird fungus on my nails, fungus treatment ineffective

Swollen thumb and fingers on my right hand (Sometimes painful)

My very far left finger on my right hand is a little bent (little finger)

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Jomox
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21 Replies
Nextoneplease profile image
Nextoneplease

Hello Jomox and welcome to the forum 😊

I’m so sorry you are suffering so badly. It does indeed sound complex. Obviously I am not a medic but my first thought is to try and get on top of the pain (with prednisolone) before starting methotrexate. But that’s just a hunch….

I know others with more expertise will be along soon (maybe in the morning).

In the meantime I just wanted to say welcome, and do stay with us. This is a wonderful forum and I hope you’ll find it helpful.

All the very best to you x

Jomox profile image
Jomox in reply toNextoneplease

Hello, thank you for very much for the reply, apologies for the to the point post and no introduction. I was reading allot of good information on here but not exactly related to my case of starting both of these together.

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 live 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,

I will be forever grateful for any kind of advise, and it's great you have a community like this here. Regards

123-go profile image
123-go

Hi, Jomox.This is the wrong community for you but don't despair.

You need to put ' Spondyloarthropathy' into your search bar where you will find other people similar to you and experiencing your very complex symptoms. They will be able to support you and offer advice.

Wishing you all the best in finding answers to your questions.

Jomox profile image
Jomox in reply to123-go

Hi, thanks for the reply, apologies, I did not know it was in the right place, I am a bit lost here, I did the search but did not find any info that helps me, and posted again, hopefully it is in the right place, I am suppose to start the 30mgPrednisone today so I don't know what to do, should I just follow doctors orders as I will be having the injection also this after....I also can't see my private messages, it just keeps loading really fast.

Seacat30 profile image
Seacat30 in reply toJomox

None of us can open our Alerts because of a problem with the forum. I guess that is stopping you from messaging too. Good luck with finding an answer to your questions.

123-go profile image
123-go in reply toSeacat30

I can open my alerts but not the chat function 😏.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toJomox

All having issues with forum at the moment-

But might be with trying one of the arthritis based forums - there doesn’t seem to be one specifically for

Spondyloarthropathy

Try these-

healthunlocked.com/arthriti...

healthunlocked.com/oa-action

123-go profile image
123-go in reply toJomox

No apology needed, Jomox. People sometimes come to this forum with health issues that don't apply here and there is usually someone who is able to point them to the appropriate forum/community. As you've read, there is a blip in the system at the moment but hopefully this will be resolved soon. Don't give up.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to123-go

Problem is -it doesn’t bring anything up….

123-go profile image
123-go in reply toDorsetLady

Have just looked-comes up for me but only showing posts from a year ago. Hopefully all will be sorted out soon.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to123-go

We live in hope🤔

Jomox profile image
Jomox

Hi, I have gotten a reply elsewhere on the board and been assured that the pred does is not that high and it is normal to be taken with Methotrexate, just don't drink alcohol, which I will sure not to.

I will keep you all updated if needed, otherwise check my profile for my story (Not complete but getting there)

123-go profile image
123-go

healthunlocked.com/nras/pos... above link may be useful.

PMRpro profile image
PMRproAmbassador

This isn't a general rheumatology form, it is specifically for PMR and GCA which are different from anklyolosing spondylitis - is this where you meant to post? Not that we don't welcome you but we possibly don't have the experience of what you need. But some of the points you need to know do relate to our experiences.

You are almost certainly being put on such a relatively high dose of pred to start to get the inflammation and symptoms under control while the methotrexate takes effect - which can take months rather than just weeks. The pred isn't being used as a painkiller, it is combatting the inflammation that is what is causing the pain - once the inflammation is reduced the symptoms will improve and you will be able to reduce the dose of pred. We here are on pred long term, it is our main medication - but it is used a bit differently in most rheumatological disorders to deal with initial inflammation and flares where there are alternative drugs but pred is used to manage things quickly.

You have to trust your rheumatologist for the moment and they are using what they find useful in spondyloarthropathies, ankylosing spondylitis and psoriatic arthritis are both in that group. The doses will change over time - but first you have to get things under control.

Jomox profile image
Jomox

Thank you for your reply. Yes I was confused, I thought I posted in the right place, but was a bit lost, I've now also posted in the correct place (I think) apologies.

But I do also think the treatment seems the same as you guys with PMR etc, so your reply is very helpful and appreciated allot, and again reassuring, I wish everyone all the best for their health.

PMRpro profile image
PMRproAmbassador in reply toJomox

No apologies needed - it is just we don't have the right experiences for you. When it comes to LIVING with the symptoms and limitation I'm sure we can help loads so never be afraid to ask questions - we will tell you if we can't help.

Jomox profile image
Jomox in reply toPMRpro

Thank you, but my doctor also said I have a mix of all of them so maybe I have some PMR also, as she does not seem certain to exactly diagnose one as she said it was a mixture, she says she thinks it is probably not anklyolosing spondylitis but axial spondyloarthritis / psoriatic and others. I think she has to study to be sure as I have so many different symptoms.

PMRpro profile image
PMRproAmbassador in reply toJomox

The main difference with those is having a history of psoriasis - the skeletal changes in anklylosing spondylitis is the key to that diagnosis I think but they often don't appear in imaging until quite late and it has to be the right imaging plus they be looking for them.

PMR-style symptoms can be common to them all too - and it isn't that unusual for the diagnosis in older onset patients to be mistakenly called as PMR.

Jomox profile image
Jomox in reply toPMRpro

Ok good info, nothing showed on standard x-ray or CAT/Ct scans, but it was shown in MRI's that I have Bone edema of the vertebrocostal facets of the 11th arch, and a impressive fracture of the left vertebral pedicle, the last recent mri shown an improvement of the Bone edema of the vertebrocostal facets, but that I now also have a possible disc bulge and would need a cervical mri for further checks, but my doctor is not doing it as she believes it is probably the axial spondyloarthritis etc.

I am 37 if that helps, and still not sure if I should have the further MRI's or the doctor is going to wait for the meds to start to take effect to see what happens?

PMRpro profile image
PMRproAmbassador in reply toJomox

You have all the right factors for an ankylosing spondylitis diagnosis - young and male! But as I say - often the changes appear quite late. You might find this abstract interesting:

pubmed.ncbi.nlm.nih.gov/276...

and this

sciencedirect.com/science/a...

Had you had a fall that would account for the fracture? Otherwise these two papers appear to support your doctor's thoughts. As for more MRIs - I suppose to some extent it depends on whether you have to pay towards them - there is no radiation exposure involved so that isn't a concern, I imagine the pred is also contributing to the improvement in the bone oedema and that once that has improved your doctor is likely to get a clearer view. And then she can be more directed in what imaging she decides on as MRIs are pretty pricey for the fundholder.

They start with older drugs that they know work well because although there are newer drugs, monoclonal antibodies, that usually work brilliantly and there are several of them, it pays to keep your powder dry, use the big guns at the start and there is nothing to fall back on.

All really interesting! Love to hear how you get on!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toJomox

See you got some replies from NRAS forum -so that’s good…

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