New inflammatory arthritis diagnoses

vickyb17uk

Hi all. This is probably going to sound a bit is a silly question. I was diagnosed with some type. Of inflammatory arthritis end of may and immediately started on a course of steroid tablets which brought relief quite quick. At the follow up appointment was started on hydroxychloroquine. While waiting for it to kick in was given a further course of steroid but this time via the injection into the butt. This way didn't seem to bring nearly as much relief as the tablets did. Roll forward to today s review I will be starting on methotrexate once I've seen the nurse.the consultant there and then offered a further course of steroids to bridge the gap. I didn't have to even ask or suggest it. These have been given to me in tablet form. Does anyone else find that they get more relief from having the steroids a certain way? And has anyone had a similar start to treatment as me?

Maturecheese

Im my opinion it is as follows, most relief oral steroids, next injections into joints and last of all muscular injections. I was diagnosed with inflammatory arthritis back in Feb and you are right the most relief comes from steroids but alas we cannot take them for long due to the side effects.

Mtx and sulfasalazine have not got my inflammation under control yet so I hope you have better luck as it works for some.

dreamdaisy

I always found the most benefit from tablet steroids: I had a number of knee aspirations followed by steroid injections but they did nothing, likewise the depo jabs in my backside. The tablets, however, were lovely, even a very small dose made a difference I could feel and I took them for three years. I then weaned myself off as they were bringing their own troubles and I reckoned I already had enough to deal with (I have psoriatic and osteo arthritis). It took nearly the whole of 2011 to finally stop taking them. If they are offered now as a short, sharp fix (the new thinking about their use) I refuse, they are far too tempting.

I take injected meth and humira, I have done for eight years. I have very little trouble with either drug and I know they are working because my bloods are good. They do not improve the OA as that has a different cause. DD

vickyb17uk

Hi
I'm due to start methotrexate for the first time tomorrow night. I've had the three days of folic acid as I was advised. Little bit nervous because of the side effects although I know not everyone gets them.

Has anyone got any tips on taking this? I was going to take it after my tea tomorrow night about 7pm

dreamdaisy

I presume you will be taking tablet meth (what dose?) so knock 'em back with a good slug of water then distract yourself with summat good on Netflix (or whatever it is you young people watch now). Try not to sit there waiting for all the nasties in the world to happen because they won't, OK? I know I am the odd one out in welcoming a new regimen with open arms and no qualms (one of the benefits of needing meds to function since the age of twelve) but you will be closely monitored and this is a positive step towards controlling disease activity.

I have had side-effects in the past from some of the meds, meth gave me a rash, leflunomide crippling headaches (that was had) and cyclosporin made me hairy but the last eight years have been fine on the side-effects front. The forum is not representative of those who are doing well with the meds etc., I have seen for myself the benefits beginning the meds earlier than me can make and I hope the meth helps you as it does so many. DD

vickyb17uk

Hi

Yeah it's the tablets I'm starting on 15mg (6 X 2.5mg) as I said have taken folic acid from Friday night as I was advised and will take first dose tonight. Just kinda anxious about how it will affect work etc . Probably going to be on the hunt for ginger biscuits at some point today as have been advised they can help with any nausea.

dreamdaisy

Side effects are not guaranteed, there may be some initial troubles as your body adjusts but these often reduce over time. I used to drink a full-fat coke to ease the nausea caused by alendronic acid (a drug I had to take when I was regularly taking oral steroids), now I have the occasional day of feeling extra tired after the injection. I always feel better in myself when I have to stop the meds due to infection so I guess they do have an effect on me but nothing that means I can't get on.

It is a shame that we don't often hear from those who are doing well on meth alone but not every arthritic in the country is a member. I began the meds with far too little far too late whereas a friend of mine was quickly diagnosed with the same arthritis and is doing brilliantly on just six sulphasalazine tablets per day - and has done for years. He does not understand my experience of arthritis nor I his, I tease him he isn't doing it properly. DD

vickyb17uk

Hi

Yeah I've been on hydroxychloroquine since may but this hasn't settled things down so now on to methotrexate

dreamdaisy

Hello, I hope last night went OK and things are fine this morning. DD

frogmorton

I just read your story through and was wondering how you got on with your MTX Vicky? I hope not too bad at all.

((()))

Toni xx

vickyb17uk

Hi

Methotrexate made me very sick and runny tummy. Have also now got very sore mouth. I felt quite out of it. I made contact with rhumatology on Wednesday because I didn't feel right at all and they are looking at going to move me over to injections. They have already said that they want to move me up in dose and as im already on 3 days of folic acid and already having effects, bearing in mind I have dirviticiltis too. They want me to make the switch sooner rather than later. That said I now won't take any more until my appointment on the 2nd November to learn how to inject.

dreamdaisy

I assume the hospital knew about the diverticulitis so why they didn't put you straight onto the injected stuff I do not know. Twerps. DD

vickyb17uk

Yeah I was a bit confused by that but I guess I'm the daft one not mentioning it.

stickywicket

We learn, in time, to always mention anything potentially relevant. It's a steep learning curve

dreamdaisy

I withdraw my criticism of your rheumatology people, they did not stand a chance of prescribing in a more suitable manner.

I always work on the assumption that whatever doctor I see has not read my notes and knows nothing about me apart from the reason why I'm there (that only works in rheumatology, orthopaedics or any other hospital speciality). I am another blurred face in a long line of blurred faces they are dealing with that day. I keep a list in my purse of my health conditions and medications so if I am involved in an accident the attending medicos will have a better picture of what they can or cannot do to me/for me. I advise you to do the same. DD

Elmbow

This is interesting. My first rheumatologist was quite convinced I didn't have an inflammatory condition from my first appointment. She subsequently put all her efforts into trying to prove this, rather than looking for the source of my pain and stiffness.
Meanwhile, another consultant gave me a massive steroid injection in the backside and I felt great for a few days but then all my symptoms came back harder than ever.
When I saw my useless rheumatologist again, she used this as proof that I couldn't possibly have an inflammatory condition (and was pretty blunt about it), because she said if I had I'd definitely have had several weeks of complete relief.
But more and more I hear of people not getting so much relief from IM steroids, so I wonder where she went to school.
(She was proved wrong, by the way. I have PsA, which showed up on scans when she finally bothered to look).

dreamdaisy

Elmbow, I too was booted out of rheumatology at my first appointment back in 2001. By 2002 they grudgingly accpted I was at least on the fringes of the people they thought belonged in their tent but the medical penny that it was PsA did not fully drop until 2006. Given the complexity of auto-immune arthritis and how it can (or not) present I am not surprised, nor do I blame the individuals involved for the delays. I should have presented my symptoms in a more efficient and effective manner. DD

rachellkl

im new here, and new to arthritis so still learning ALOT
i agree the tablets worked a little for my inflammatory arthritis but the injection did nothing,
The methotrexate is making my hair fall out,
what i dont understand is.. why cant i close my hands? i cant make a first? and my knees wont bend its driving me insane? she said they dont seem too swollen... so why don't they bend? im 34 this illness come out of the blue

[Deleted User]

Hi rachellkl and welcome to the Versus Arthritis forums.

As a DMARD, methotrexate reduces the activity of the body’s immune system. It also comes with a regime of blood tests as it causes fewer blood cells to be made in the body. It may be this which is making it difficult to bend joints.

Hair loss is a noted side effect of methotrexate

All the advice says you should tell your doctor straight away if you develop serious problems whilst taking this drug. Do take time to read through the information on our website: https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

The forum is a great place to ask questions and I'm sure others who are taking methotrexate will share their personal knowledge and experiences.

Best wishes
Brynmor

dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. I am in my twenty second year of dealing with the dross of meds and arthritis so know a little about it.

I have had times when inflammation has been at high levels, with fat and hot joint to prove it but I have felt OK and my flexibility remained at its usual poor levels. Other times I have had little flexibility and my inflammation levels have been virtually non-existent: auto-immune arthritis has a will of its own, is not reasonable or logical.

I take injected methotrexate and have done for around eight years. I know my hair is thinner (it was never thick to start with) and I can see my scalp (but only if I look in a mirror). It is now very short (grade 2) because that saves a lot of faff. If people comment negatively then I reply that chemo does affect one's barnet (that stops them in their tracks and has a very small grain of truth in it) but more often that not it goes unnoticed; over my arthritic years I have learned that people are not as aware of us as much as we might like to think they are. The meth is combined with another injected medication, humira, which is one of the bigger guns. I know they are working because my bloods show the disease is under control (I have psoriatic arthritis, PsA) but physically I feel no benefit whatsoever, mainly thanks to starting these things far too late and I also developed osteoarthritis (OA) too: the meds for the PsA do not affect / improve that as it differs in nature. Tablet-wise over the years I have tried meth, leflunomide, cyclosporine and sulphasalazine. The tablets 'worked' in that all reduced my inflammation levels to varying degrees but none worked in the sense of getting rid of the disease or fully bringing things under control. Injected steroids both in my behind or directly into my joints brought no relief apart from one into my right ankle for the OA: that was very successful but of course wore off so I no longer bother with them: I prefer living with the devil's I know rather than having a break from them. I am used to the concept that the meds only control not cure but naturally people expect better of 21st century medicine.

If this has come to you out of the blue then I am truly sorry. I was fortunate to be born with auto-immune nonsense so for me this is more of the same and fundamentally no big deal. It is known that these things run in families thanks to genetics but they can also start completely of their own accord. Do you have RA? There are around three hundred kinds of auto-immune inflammatory conditions including various kinds of arthritis but the meds are common to all. DD

stickywicket

Unfortunately things don't bend because, right now, your arthritis isn't properly controlled. How long have you been taking methotrexate and at what dosage? It can take up to 3 months to work properly.

When you next see the rheumatologist do let them know about this. The routine blood tests should, ideally, tell them all they need to know but don't always. How often do you take folic acid? It's used to mitigate against side effects but some need it for only one day per week and others for six. Please don't alter your dose though until / unless rheumatology agree to it.

Hair loss is usually minimal and usually lessens over time.