complex question like your views please. : Hey everyone... - NRAS

NRAS

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complex question like your views please.

Leics profile image
23 Replies

Hey everyone hope you’re all having a good day.

So here’s my question. I’m currently taking 7.5 injections of methotrexate and yesterday I had a routine appointment with immunology. I’m clinically immune suppressed due to retuximab infusions in 2013 which knocked out my immunoglobulins and they’ve never recovered. Anyway a few years ago I was given a pneumococcal vaccination to check my immune response and I failed it miserably. So yesterday I had another pneumococcal vaccination as my immunoglobulins have had a slight recovery (if you ask me it’s all the chest infections I had last year that booted it up the bum haha). I have to have another blood test in four weeks to see if the vaccination has had any effect this time, I haven’t had any reaction to the jab not even a sore arm which I’m pleased about. This evening I’m due to inject the mtx and as I’ve only been on this for six weeks and things appear to be quietening down I’m reluctant to not do it as my RA has been awful for years and I’ve had many of the last 9 unmedicated which has done me no favours at all.

being as my blood test is in four weeks is it worth pausing mtx or not ? I know you can’t give medical advice but what would you do ? Inject or not inject ? That is my question. My RA symptoms are not controlled yet. Just as a small point of interest I’m taking prophylactic antibiotics daily and haven’t been considered for IVIG don’t know why perhaps because it’s in short supply and cost and my immunoglobulins were .4 higher than the minimum to make me automatically get them and the fact I’ve somehow managed to remain healthy ish with infections but that’s becoming more of a problem these days

23 Replies
Boxerlady profile image
Boxerlady

I'm not sure why you would pause Methotrexate for a blood test but I'm probably missing something 🤔

Personally I wouldn't pause it at such an early stage unless it's absolutely necessary and I was advised to do so by my rheumy team.

Leics profile image
Leics in reply to Boxerlady

yeah rheumy team aren’t aware of vaccination yesterday yet and they’re impossible to contact. The reason for vaccination is to check if I have an immune response to it and they’re doing blood test in four weeks to check that. I just don’t know whether I should give my immune system time to respond to vaccine or not ?

Neonkittie17 profile image
Neonkittie17 in reply to Leics

Sorry, I don’t know what to say as I have had very similar issues myself as you might recall re hypogamma and chronic bronchitis due to low igG and very low IgM following 8 years of Rtx. (That’s frustrating you are borderline for igiv and I think my immunologist would have disregarded the .4 and let you on it.) Here at my hospital, it’s usually under 3 igG my immuno guy told me. My igG hovers around 5.6-5.7 for years yet this is enough I’m told to cause the chronic bronchitis as well as very low igM causing infections. My respiratory guy says even if it was 6 and just lower than normal igG that it’s down enough to cause the chronic chest infections coupled with very low IgM.

I had zero antibodies to my flu vaccine last year and minimal response/sub optimal to pneumonia and they weren’t sure if it was Mtx or Rtx. I had the functional antibodies blood tests too. I paused Mtx for a month which was my own decision. I wasn’t flaring though as Rtx was still keeping RA away.

I’m going to have to ask how my immunologist wants me to do it this time re flu and pneumonia, but I won’t speak to him for another 3 weeks so sorry I can’t be of help at present. I do wish you lots of luck. I’ll let you know what I find out. 💗

Leics profile image
Leics in reply to Neonkittie17

That’s very helpful. Thanks for your reply. I do hope you manage to see your immunologist soon and get some answers. I’m pretty much in the same situation as you hoping that I don’t get another 8 months of chest infections and a cough I just can’t shift. Antibiotics and me don’t sit very well so having to take a low dose every day doesn’t make me feel good. At least the mtx seems to be calming everything down. Some of the reason for not having immunoglobulin therapy was, to start with I didn’t keep on getting infections so decided that if I could get away with it then I would but as things are getting worse now I’m ready for whatever they suggest which hasn’t been much. I’ve no idea if the covid jabs I’ve had have worked or not because they won’t check my antibodies but I suspect that I don’t have any. I will keep it all crossed that your IgG and IgM improves my last IgG was 5 so a vast improvement but IgM is not so good.

Neonkittie17 profile image
Neonkittie17 in reply to Leics

Hi, Hope this helps and sorry for length but a few things hopefully of relevance/help. I’m glad your IgG is improving even though hovering around 6 is still hypogamma and can/does cause infections as we know. IgG needs to be higher to prevent recurrent, chronic infections especially chest/bronchial ones. (I have had a cough for 4 years unless I’m taking Doxy abx.). My IgM is permanently low and never improved since 2018 when Rtx started to cause the hypogamma as I said last post. Even when/if B cells repopulate I was told they don’t necessarily become Ig’s for some time. (Was your criteria <4 for ivig? ) Can’t recall from previous posts some time ago sorry when your last Rtx was but know it wiped your immune quickly, 😑

Something I forgot to say yesterday as that when the igG went to hypogamma I started with the chronic chest infections. Since early 2018 I’ve had 28 lots of Doxycyline every other month which calmed and stopped the problem for it only to return the next month. Not necessarily infectious bronchitis as it’s been tested a few times and was clear, but it’s hypogamma causing over production of sputum and catarrh, wheeze and cough and it’s been really awful the past 4 years. Clear CTs but an X-ray following someone passing a nasty cold germ early 2018 which caused pneumonia. I see you are taking prophylactic abx. Is there any noticeable improvement for you as yet? My respiratory consultant says Azithromycin can often take many months to work properly for chronic bronchial problems. Abatacept and other biologics will lower the Ig’s too although hopefully not as much as Rtx so it’s a question of still monitoring them. When my rheumy learned of how much Doxy and the awful state of bronchitis she said I need to switch to Abatacept as it’s “more gentle on the lungs“. Also to stop Rtx as it was proven via the covid antibody blood tests that Rtx scuppered my vaccines. It has taken a year to catch up/repeat vaccines (still not there yet) and wait for B cells to repopulate before I could start Abatacept. I’ll test for covid antibodies after October when I’ve had my first booster.

I’ve now just started Abatscelf sub-cut and I’m taking a smaller/holding/prophylactic dose of Azithromycin tablets 3 times weekly since July. This is as you know so I won’t have to stop/start Abatacept to go on Doxycyline. My respiratory smd immunology consultant’s wrote to my rheumy to say this had to happen.

I did my own Roche spike protein antibodies test and sent a little phial of blood to Testing for All in June 2021 and had zero antobodes. When I started to speak to the immunologist who is in a main hospital and not my local one where rheumatology is, I told him of my own test and he said he’d send a COVAB blood form for me to have done at my GP. I had zero vaccine antibodies again in October 2021. (My prior Rtx was 6 months before then and I also left 6 months after my September 2019 single Rtx infusion before I had my first Pfizer vaccine February 2021 and that wasn’t long enough!) My rheumy didn’t offer this option but my biologics nurse said I needed an immunologist as I was so unwell and at that point I’d had 18 lots of Doxy in 3 years. I’d also asked to speak to someone who could fathom this chronic problem. I had a lot of patience and tried 28 lots of Doxy for the bronchitis to keep recurring by the time I was told to stop Doxy and start Azithromycin. I hope you can improve your situation and definitely feel you should be given an NHS Covid antibodies blood test.

Leics profile image
Leics in reply to Neonkittie17

seeing your issues with hypogamma has put my mind at rest because although it’s an awful situation for both of us especially as we keep getting recurring constant infections and have to keep pausing RA treatment. My immunoglobulins have been about 3.6 since about 2013 after my final Rtx infusion I guess I’m lucky that I’ve been reasonably well except for the last 3 years. I was extremely pleased that my IgG is now at 5.0 and can only attribute that to constant antibiotics and infections. Doxy makes my hair fall out and affects my eyes and I don’t know why. They’ve mentioned azithromyacin but I’m extremely allergic to some antibiotics so I argue the case that I’m best to stick to amoxicillin because at least I don’t have anaphylaxis with that one. I’m rather reluctant to try azithromyacin coz the last thing I need is to be hospitalised again with a 5 hour fit. I had a really bad infection last autumn which took 6 different courses of antibiotics and still took 3 months to go. As you’ve said we produce more sputum and once again I have another test to send off after getting the common cold 6 weeks ago. I think the criteria for immunoglobulin therapy is 3.2 and as I’ve been well not had too many massive infections but there again haven’t had much in the way of RA treatment either. Let’s hope everything improves for us both but at least you’ve given me more information which I thank you for.

Neonkittie17 profile image
Neonkittie17 in reply to Leics

With Rtx you don’t pause of course unless it’s to postpone a date for it if you’ve got an infection, etc or to try get a veccine, but with Mtx it means stop/start re stronger abx. Hypogamma and low Ig’s are definitely involving the over production of mucus for us. Thank you for your info too and I’ll let you know what my immunologist says /results of blood tests next time he phones in a few weeks. Hope you can make your pneumonia vaccine/med pause decision. I’m allergic to penicillin and that group of abx so why Azithromycin was chosen as the prophylactic.

Leics profile image
Leics in reply to Neonkittie17

Ah I see I would be most interested to see what your immuno says at your next appointment as would others I’m sure. I’d be most likely to be allergic to azithromyacin and penicillin is the way to go for me but I consider myself weird in that way that anything other than penicillin based antibiotics I have a very hard time with.

Neonkittie17 profile image
Neonkittie17 in reply to Leics

Severe rash reaction to Penicillin and sickness too. You are the reverse of most people re Penicillin! Yes, I will be monitoring my bloods via the rheumy and immunologist and in time hope the results improve. Can’t say they’ve got any worse really than they were when on Rtx, but it was bad enough re my Ig’s and no B cells. It’s frustrating as apart from those my bloods have been really very good. .

Leics profile image
Leics in reply to Neonkittie17

yeah me too even with starting mtx. Onwards and upwards eh. Good luck to you.

Neonkittie17 profile image
Neonkittie17 in reply to Leics

We keep plodding on and doing all we can. We are persistent! Good luck too to you.

Luludean profile image
Luludean

neonkittie, you have an immunologist?? I have not heard of one round here in Cambridge UK.

You all seem so informed about your conditions.

I am still floundering , SO excited about actually gettng INTO rheumatology department after 3 years of being prescribed biologics etc down the phone. It has been awful , especially as my GP will not discuss biologics . ( I am on no medication from Rheumatology at all as Humira and Benapali made me ill. )

Now I have cataracts, need a hysterectomy , mitral velve repair and persistent AF. I live alone and my close friends keep dying.

My usual positivity has vanished down the plug hole.

Leics profile image
Leics in reply to Luludean

I’m sorry to hear that you have such a lot going on too. It seems that you have a surgery or two to get through before your rheumatologist will sort out a new drug regime. It’s so difficult having no relief from RA symptoms and very easy to be quite understandably down about it especially if you have the added stress of friends passing away. May I suggest that you talk that over with your GP and try and take one day at a time if you can. I do know what it’s like to be unmedicated as I’ve had many periods of time without meds too and sometimes have been at my wits end with it. Do you have an idea when surgeries will take place because I’m not sure if being on Dmards or biologics wouldn’t have to be stopped whilst surgical procedures are done. It does help to know your condition and I think neon kitty and myself have had to educate ourselves to make important decisions due to our low immune system. Good luck with the op’s and maybe post an update on health unlocked as I’m sure everyone would like to support you and wish you luck. You’re not on your own.

Neonkittie17 profile image
Neonkittie17 in reply to Luludean

Hi Lulu, positivity is often hard to find when you’ve so much going on. I think one of the hospitals near you in Cambridge will have an immunologist or immunology centre/department. Probably a university hospital. I’ve had RA since 1995 age 35 when diagnosed, so I’ve some experience behind me and know how my own hospital and main city hospital work re NHS rheumatology and related areas. You often tend to be proactive when things start to go to go wrong re your meds and side effects, and you pick up knowledge from the consultants. It’s bewildering when you are quite new to RA. It’s been so hard the last couple of years for the majority of RA patients and in general to get the usual level of treatment and appointments we’d normally have. Let’s hope you soon have a plan sorted re a new RA med to improve your issues. Due to several Immunology issues my rheumy consultant couldn’t answrr, she said I needed to speak to someone who could, hence the immunology referral. I had had 3 years of bronchitis and hypogamma/low Ig’s.

The two biologics you tried are anti-TNF drugs and there are many other non anti-TNF’s for RA treatment. Neither of those worked for me either (although mine were the original Humira and Enbrel and not biosimilars.) Your rheumy will discuss and hopefully help try make sense of what needs to happen first in relation to your RA and hopefully liaising with your GP and other consultants.

As Leics said, you’ve got non RA ops to think about, and also you might have to stop start a new med for RA around your ops, but that’s not always the case and for your rheumy to discuss and decide with you.

Very understandable you feel low due to all of this. I would drain the positivity out of most of us if we were juggling all that you are. It has been a very difficult time and you live alone so no one to tell at home. I definitely think you need some support from your GP and a plan to prioritise the health issues. I hope you can find some positivity and I think you will when you see your rheumy. All this stress won’t help your AFib. I hope once you’ve seen the rheumy things start to fall into place and it doesn’t seem so daunting. Last year I was juggling multiple consultants and still am but have managed to shelve one. Also, it’s awful to always be doing/organising something medical. I decide it’s a day off doing all of that and relax, just so there’s a break and a little relaxation for a day. I find this works for me so I can feel more refreshed to start again the next day sorting medical things. Hope you get to see the rheumy soon. 💗

Maureengibson profile image
Maureengibson

personally I would hold off 2 weeks. There has been a study looking at antibody response after the covid vaccine, and those on MTX who omitted 2 weeks post vaccine did better. Apparently this is similar results to other vaccines. That’s just me though, but given your lack of immunoglobulins I’d want to do whatever would help. I’ll attach the link for you to read

hospitalhealthcare.com/covi...

Leics profile image
Leics in reply to Maureengibson

thanks for the reply. The link to the study findings was very useful to read. But as you know my immunoglobulins are quite low and the vaccination I’ve been given is to check for any response as the last one I failed miserably. I’m still pondering what to do but I don’t think I could pause the mtx for two weeks as I’ve only just started on it and things are FINALLY calming down. The immunologist did make a point that RA inflammation can also affect your immunoglobulins so basically I’m damned if I do and damned if I don’t. Thanks so much for the reply it’s much appreciated.

stbernhard profile image
stbernhard

Hi Leics, I'm glad to hear your RA is getting better with the MTX. We all have been told to stop MTX for two weeks after the autumn booster to give the body a chance to develop the antibodies. Maybe the same applies to pneumococcal jabs? I hope you find a solution and get better control of your RA at the same time. All the best.

Leics profile image
Leics in reply to stbernhard

Ah thank you for your support. My next Covid jab (autumn dose) won’t be for a couple of months and I will perhaps see what rheumy says about that as I’m due to see them in October. I know mtx will suppress my immune system but I don’t know if that means it will suppress my vaccination response and immunology couldn’t tell me that either. As it’s been such a long time since my RA was anywhere near under control I might just carry on with the mtx because inflammation will probably skew the results too according to immuno but probably not the bits that they’re looking at ???? I don’t know but they’re aware I’m on mtx and I wasn’t told to stop and they gave me the pneumococcal vaccination anyway 🤷‍♀️ which I wasn’t expecting. Perhaps they’re looking into some treatment for me after results ?

stbernhard profile image
stbernhard in reply to Leics

Sounds good to me. I've been off my RA meds because of cancer treatment, so I know how bad it can get if you leave them out. I hope it'll all work out for you.

Leics profile image
Leics in reply to stbernhard

Thanks I hope your now able to get your RA control back after your cancer treatment which I believe was successful if I remember right. I was very pleased to hear of your remission. Immuno did ask if I’d had any steroids or injections since my last depo in June as they perhaps wouldn’t have done the vaccination in that case so doubt steroids would be an option at this time if I was to pause the mtx for RA control. Such a complex situation and immunology is mind boggling. Thanks for your support.

Monkeysmum profile image
Monkeysmum

A difficult question Leics. If they haven’t told you to pause MTX I’d be tempted to continue if it were me, you are on quite a small dose of MTX so hopefully wouldn’t dull response to the vaccine too much? If the second blood test shows a lack of response to the vaccine again, would they then offer further treatment anyway? To be honest, I’m struggling myself with whether to pause my MTX after the autumn COVID booster as well - I’ve read the study above and the new BSR guidance on it, but it’s a difficult decision to make when your RA symptoms aren’t stable and you don’t want to risk them getting worse. 😳 Good luck with your upcoming appointments xx

Leics profile image
Leics in reply to Monkeysmum

Thanks it’s a juggling act that’s for sure. My immune system is so rubbish I’m not sure like you what to do and whether it would make any difference. It seems out of 13 substrates I failed 10 last time so to be honest not expecting that to be any different this time. I need to get my RA under better control because I’ve had a number of years when I’ve been really struggling so to me that’s more important at this time. I think I will just carry on with the mtx because even though it’s a very low dose (my choice) at least it’s helping a bit and I have somewhere to go with it. Next covid vaccine I will make the decision when it’s time.

Monkeysmum profile image
Monkeysmum in reply to Leics

Keeping everything crossed for you 🤞

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