Methotrexate & Chest Infection Again, Advice please?x

DebbieT

Hi,

I was started on mtx about 6 years ago for PsA & it was working well. I then went into a massive flare of plaque psoriasis & my dose has been stuck around 20-25mg a week for about 2 years with the odd month at 30mg to treat flares, I've never been completely clear & my dermatologist describes it as severe chronic plaque psoriasis.

I've had a chest infection since April which was finally found to be drug resistant & co amoxiclav cleared it up n I was infection free for about a week.
Well I've seen the GP again today & he's gona refer me to a Pulmonary Team coz I've got a fresh infection & he thinks it's related to the methotrexate as I'm now on a constant dose of 30mg, I'm VERY lucky & don't get any other side effects from taking it ... That I know of!!

I know DD has suffered a lot with infections too. So my queries are:
Wot do they think mtx does to the respiratory system with long term use?
Do you think it's likely i'll taken off of it?
Wots likely to happen to me now coz my PsA & OA have been flaring of late?

I know it's unlikely anyone will be able to answer these questions but it helps writing it down.

Thank you all.xxx

salamander

Hi Debbie,

I have so much empathy with you as I got taken off Mtx because my chest infections were so bad and I was only on 7.5mg! I went onto Cimzia and had the same problem and came off it and onto a half dose of Enbrel and am now under a chest specialist who sees me every 6 months. I think your GP is doing the right thing in referring you on. A chest consultant will run tests to see how your lungs function (at least they did with me) and I now have antibiotics at home plus steroids to take if I get bad. I feel a lot more confident in taking the drugs now I am being monitored and he is the one who tells the rheumy what dose of drugs I can be on! I hope things work out for you.

DebbieT

Thank you so much!! I honestly thought I'd end up with no meds so knowing there are more to try is a huge relief

Wot classification do they come under please?

I've got a big smile on my face now.Lol Uve reassured me a lot & I'm now relieved the GP has done the referral, I suppose I knew it couldn't go on like this really, I guess I'd buried my head a little.

Thank you.x

Boomer13

Good luck, Debbie. I hope they try a biologic and get your lung problems sorted out. You sure don't need that too.

Hugs to you dear (())
Anna

salamander

As Boomer says, they are biologicals or anti tnfs. You have to be assessed for them. I'm sure DD will fill you in with her experiences with PsA and how that works. I had to ask if it was possible to have a lower dose to prevent recurring infections, it wasn't presented to me as an option. But having a chest consultant has made all the difference to me.

I'll be interested to hear how you get on. x

DebbieT

Thank you both so much!!

I have to say with the whole 'brain cyst' drama I now know about it's all been getting me down quite a lot! So hearing there are further options honestly is great

Ive asked my Dermatologist on a few separate occasions about changing to a biologic but she's never been keen because of cost :? I've never been right since I had Glandular Fever 2 years ago & had to stop the mtx for about 6 months, it was an utter nightmare time for me!! I ended up with different types of psoriasis n even had them on the soles of my feet & the palms of my hands, the pain from that on top of the 2 arthritis types was ridiculous. I think that's wot I've been fearing again so much!!

I will gladly keep you posted & I can only hope my experience is as good as ures is

Thanks again.x

Boomer13

I think persistent lung infections means you will easily qualify for anti-TNFa, or other biologic. I hope someone reassures you soon that you won't have to deal with a huge flare if you need to stop mtx.

I was so sad reading your story. You sure have more than your share to deal with.

big hug((())) again,
Anna

ritwren

I've just caught up with your thread. You've been having an awful time of it. Hopefully you'll get seen by the lung people soon but when are you seeing your Rheumy again?
I have PsA too and am now on my 2nd biological treatment as the first one did'nt make much difference at all except I got worse. I'm on 25mg Methotrexate and have been for years. I went off it last year and tried Lefunamide which made me flare to the extent I could hardly walk and then got back on the Mtx and because I'd failed 2 DMARDS I was able to go on the waiting list for biological treatment.
I know it's difficult to get biological treatment from most of the dermatologists but there are a couple of them that are supposed to really help with the skin part of PsA as well as the joint side.
I'd get an appointment with your Rheumy and discuss your options DebbieT as I know you have to have tried 2 different DMARD's and then after that there's a waiting list.
Best of luck, do let us know how you get on.

DebbieT

Sorry, I got a bit 'woe is me' last night, I've slapped it out of myself today tho

I've got my 6 monthly appointment with the Rheumy on July 9th. I'd hadn't actually thought about discussing with them, stupidly, as my dermo seems so in charge of my dosage etc But it was started by my rheumy!! I can't believe I didn't think of this!!! The rheumy I've seen from the start has left so it's going to be someone completely new to me. I'm trying to think of this positively, I freak at change usually, as my old one was so fascinated by fibromyalgia n my arthritis became unimportant. That's how it felt anyway!!

I had report done for my Dla renewal & for years I've thought weakness in my lower back & hips was muscle weakness wen it turns out I'm riddled with OA & PsA in both, I felt like a right numpty :?

I was on Sulphasalazine as well as mtx at the start, is that a DMARD too? I'm grasping at straws now.Lol

I've received the self-referral letter today for the chest team so I'll ring 1st thing on Monday ... I really do hope it won't be longer than a 3 month wait. If it is I will ask the GP to expedite the request, that can often give you a lesser waiting time.

It's so good being able to chat to others that understand & who have more experience with all of this. I was so complacent about it until recently, I think I took my cues from my rheumy. She didn't seem that bothered so I figured I didn't need to be ... Wot a doughnut I've been.

Thanks so much. The kindness & support is gratefully received.x

dreamdaisy

Hi, poor old you, you are having a rough time. It's so easy to become bored, complacent, muddled, irked, frustrated and darn well hacked off with the whole malarkey. Been there, done that and will no doubt go there and do it all again, just for the helluva it.

I'm 'lucky' in that none of the meds I've tried have ever done anything much to help so my expectations are decently low. The best combo has been meth (15mg weekly) and humira (40mg forttnightly) but that is only in terms of blood results and disease control, not in any benefit being experienced (although that could be down to the OA which of course those meds don't touch).

I dont' get too many chest infections but when I do I stop the meth and humira until better (but keep up with the sulph). I think I'm right in saying that sulph is a DMARD (it helps to keep my skin clear of the P) and, because I've been on it for so long and don't have any trouble with it, I tend to regard it as no stronger than swallowing six orange smarties - erroneous thinking, I know.

TNFs are usually supported by meth but at a lower dose because you obviously have the big guns involved. I hope you will be given the option of them - there are one or two on here who no longer post because they are having very good results with them - I hope you can join that elite. DD

DebbieT

Hi DD,

I hoped you'd post coz I know uve got great knowledge n have helped in the past with my 'deer in headlights' panic.Lol
As usual the care, support & advice on here is fantastic

So we've got both the same arthritis types, I didn't realise that. Perhaps that combo is common? Aren't we so lucky :?

Wen you say no benefit do you mean pain wise then?

Sulph made me feel ill at all times, was like living with a constant hangover without the benefit of the night out, Too depressing.Lol My bloods have never been normal, they've been checked out by a specialist now tho & they're 'my normal' apparently.

So if mtx gets classed as a fail & sulph already has been then I stand a better chance at other options being looked at. Would you think thats a fair comment?

I'd hope if I was ever lucky enough to join that elite that I'd still hang around n post where I thought I could contribute. I do try now but I'm not doing too great a job ... I'll keep trying tho

Thanks DD.x

dreamdaisy

I've tried over the years tablet meth, leflunomide and cyclosporin, I have had two 'radio-active' chemical synovectomies on the left knee, and two anti TNFs, infliximab (wonderful for the first dose and thereafter comparativel ineffective) and enbrel (which tried to explode my liver). The one constant is sulph which I began in February 2002.

By benefit I mean a noticeable decrease of pain and ditto increase in mobility: I've not achieved either but apparently I do move a little easier for the first few days after the humira. (I'm not aware of it but no matter.) The skin does behave itself for most of the time but I do get the bubbly stuff on my palms and soles, and there is a constant flake on the insides of both ankles. On the whole I get off fairly lightly with it. DD

salamander

Debbie, you have to have tried 2 dmards in order to qualify for anti tnf. Cost should NEVER be a consideration!! I don't take Mtx with Enbrel but a very low dose steroid. Not ideal but I would go back on Mtx ever again, I was so ill on it. Good thinking about the rheumy visit. I hope you get on well. Sometimes it's good to have a different consultant, different perspective and all that. I'm changing mine too as old rheumy retired. Don't know how I'll get on!

stickywicket

DebbieT wrote:

The rheumy I've seen from the start has left so it's going to be someone completely new to me. I'm trying to think of this positively, I freak at change usually, as my old one was so fascinated by fibromyalgia n my arthritis became unimportant.

I was so complacent about it until recently, I think I took my cues from my rheumy. She didn't seem that bothered so I figured I didn't need to be ... Wot a doughnut I've been.

I don't think it's you who is 'the doughnut', Debbie. I think a new rheumatologist, rather than one who is so fascinated by your fibromyalgia that the arthritis becomes unimportant could be a very positive move. I find new docs often have interesting and helpful new perspectives.

Who knows, your new one could as easy on the eye as my registrar So tall, dark and handsome I completely forgot to ask what the extra blood test was for last time. I just gazed into his eyes and agreed to whatever he wanted :oops: (There's no fool like an old fool )

DebbieT

Now I understand, thanks I have good & bad days n it's hard to tell whether it's PsA, OA or Fibro pain thats good or bad. I seem to have pain everywhere now. My elbows, wrists & feet are fairly new to the mix tho. It's confusing with all of these things going on. Maybe I should make a game of it ... Figure out which pain is which!!Lol They blend into one huge throbbing wave of toothache ... that must sound daft :?

I've checked & sulfasalazine is a DMARD so if I get mtx classed as a fail that will be 2 DMARD fails, that's a relief

Salamander It is scary having such a big change but like you I'm hoping it could mean a new rheumy = new perspective = fresh ideas. Knowing my luck I'll get discharged tho Things seem to be like that for me lately, all going the wrong way.Lol
SW, I've been a bit of a fool letting that diagnosis of 2-3 yrs ago take over most of the sessions. U are right tho, a change could well be exactly wot is needed tho I'd die of embarrassment n have to dash (wot a joke.Lol) out & buy new underwear for my hip injections.LOL I'm glad ure tall dark & handsome is making you flumoxed ... We're aging & in pain not dead lol

DD, My mobility has been much worse in the past 2 years. I'm having to use a rollator (?) more than my crutches this year, it's quite embarrassing for me coz other than being over weight I 'look' fine even tho I'm falling apart on the inside :? Invisible illnesses are very hard going & I'm SO sick of being stared at by 'old friends' that don't even say hi as they pass me unless it's to dig for info on why I'm using walking aids

I get hardly any visible swelling, it all seems to go on internally as my crp is usually high in 9 out of 10 blood tests & I have them weekly!! I've no idea wot that means?? I know my tendons & ligaments had done the most damage wen I was diagnosed in 2007/8. My fingers swell up at times. But other than that I think thats it. Odd eh?

Ive always got large plaques, nothing to wot they were like b4 mind you!! I can cope easily like this. I need these blooming infections gone tho, thats for darn sure!! Steroids don't seem to affect my psoriasis, which is hard to believe, it's always been infections that cause flares with me ... Not even stress triggers it. My dermatologist is stunned coz I have a very reactive life & seem to lurch from one crisis to the next but it only alters if I'm ill. The same can't be said for my arthritis & FM tho.

Great chatting & sorry about my tangents & waffling on.x

salamander

Any excuse for new underwear is not to be taken lightly Debbie, treat yourself!

DebbieT

Lol Ure right x

dreamdaisy

Don't get too excited - although sulph is a DMARD it doesn't seem to count in the same way as meth, lef, cyclo et al. My CRP and ESR was always high on the other combos (at their worst they were in the 160s and 170s, at their best in the 50s) but on the humira/meth they have been under 5. Over the past two years I too have graduated to the rollator as a matter of course (I'm saving up for a new one) but so what? It means I can go out and do more for longer so what's not to like? As for those who look oddly at you - their time will come. 8) DD

DebbieT

Oh bl**dy hell, I thought my chances were loads better. Oh well, lets hope I can get this new Rheumy on board anyway & then the respiratory team n that may swing it in my favour. I appreciate the honesty tho, I'd rather have as much information in hand so there's less chance of huge disappointment
Thank you DD.

I know it's necessary for me to function to use the rollator or crutches it's just odd I suppose. I was a sports coach n I'm 43 now but I feel more like I'm 83!! It's still getting to the place of acceptance I think, so it's possible I'm more conscious of it than others are ... Thanks, a little break through I think.Lol x

villier

Debbie sorry I no nothing about your meds as it's OA I have, I just want to wish you well, I hope your new consultants can get you sorted out quickly..........tc.......................Marie xx

DebbieT

Awww, thank you Marie, It's much appreciated

I have OA too but it seems only anti-inflammatory & pain killers that helps, have you found that to be the case??

I've been reading the TKR & THR threads ... I consider myself rather lucky at the moment!!

Thanks again & you take care too.x

dreamdaisy

OA is treated by GPs with anti-inflams, pain dullers and exercise, the auto-types have all the 'serious' meds which are prescribed by rheumatologists and are designed to suppress the immune system and therefore subdue disease activity. This is why they have no impact on OA as the root causes of that are different in nature.

It is not easy when dealing with mulitple conditions to give equal value to each. Sometimes one will come to the fore and the others are 'forgotten' for a while. DD

DebbieT

Thanks DD. I think my PsA needs the most work at the moment & FM is all pain management & exercise too so that can treat the OA as well. Brilliant, thats cleared things up in my foggy head

Cheers.x

dreamdaisy

I've been thinking, it could be that in your area they take a different approach and may therefore also take the sulph into account - like all things it varies from area to area. I remember a rheumatology nurse boasting to me that at my hospital they now introduce the anti TNFs within six months; I couldn't even fake the joy at that when it took me years of failure before I was given the chance. DD

DebbieT

The only reason I've been told no so far is 1. It's too expensive & 2. I need to fail on two DMARDS & so far methotrexate hasn't been classed as a fail with me. So I think the new rheumy & wot ever comes of the chest investigations may be wot makes all the difference for me.

Omg I bet you were gutted after waiting for so long I thought they were supposed to be making these things uniform waiting times across the NHS. I need to be more circumspect obviously :? x

dreamdaisy

I wasn't gutted as such, just rather rueful. I am sure that if I had received any form of treatment much closer to the beginning of my troubles I wouldn't be in the mess I am now, I would proabably be in the mess I was in 2004-2004. Anyhoo, that's water long gone under my rickety bridge. I had also learned by then not to expect anything of the meds so that I then might be pleasantly surprised. That could still happen for you.

Rheumatologists are people who are trying to help us as best they can but with very limited (and sometimes very expensive) options. Some react very well to the meds but many more don't - it's compromise all the way. I think I am costing my health authority at least ten thousand pounds a year - multiply that by all the others at my clinic who are on the anti TNFs and thassa lot of dosh. DD