Immunosuppressants and constantly getting ill

Rach101

Hi everyone

I’m doing well arthritis wise and have been told it has gone into remission which is great news.
However, I’m currently on hydroxychloroquine and sulfasalazine and over the past couple of months I’ve had one illness after the other. Throat infections, cold and coughs etc.

My question is do you think it’s worth stopping the tablets for a day or a few days to allow my body to recover? Or will it cause a flare? What do you guys do? I’ve ended up having various days off work and I’m told I’m at a trigger point so I really can’t afford to have any more time off. I lost my last job due to the arthritis so I don’t have a great track record.

I don’t have a helpline I can call so I’d really appreciate any advice.

Thanks Rach xx

dreamdaisy

Firstly, it's good news that the sulph and hydroxy have things under control - that must be lovely!

Secondly, it's not so good that you keep getting bugs but this is the worst time of the year for such things. Increase your hand hygiene and that of those around you, keep anti-bac wipes to hand for every surface especially door plates and handles, handrails and keyboards, and avoid guests who have colds: friends know to check with me if they have sniffles before they come to visit and vice versa. I stop the meds if I have a sore throat for more than a few days and / or a temperature but that is rare mainly due to all my precautions. Initially it's a faff but once the habits are established it's easy to do and I hope you are able to stay bug-free in the future. DD

jennand

I went through a stage in 2016 when I had quite a few infections, mainly sinusitis which required several courses of antibiotics. Both my GP and Rheumy felt that this was too much so my Leflunomide was reduced from 20mg to 10. Hydroxy remained the same. The infections all but ceased ( although I do take great care) but I don’t have very good control. To this end, I am preparing to start biologics. I think it is a case of suck it and see. If your meds are reduced AND you retain control, then it’s all good.

dreamdaisy

Hello, how are things now? I hope they are improved and you are keeping bug-free. DD

Rach101

Hi there
Thanks for your replies and sorry for the delay in replying.
I have had a reprieve for the past week which is nice and have just about eliminated a lingering cough. I’ve started to be more aware of hand washing after contact with other people and am trying to make sure I don’t touch my face so hopefully I won’t catch bugs so much!
Thanks Rach. X

dreamdaisy

Increasing one's hand hygiene is essential once one begins the meds. Humans are filthy, everything they touch is filthy, people cough into their hand then use the same hand to open a door, chefs and waiters talk over plates of food (think of the spit showering over your grub . . . ) never, EVER eat bar snacks because their contamination levels of faecal matter is terrifying. I remember a till attendant being caught by a sudden sneeze, one of the ones you can do nothing about, and I swiftly anti-bac wiped all my shopping after it went through the till.

When I was teaching my pupils soon got used to the anti-bac squirt when they arrived and after a sneeze (both them and me). Friends do it automatically when they arrive (they've had years to learn) and they also know to check when they have a cold whether I want to see them or not. It sounds perverse, it sounds extreme, but when you are the one who is always ill establishing these habits is essential. DD

Maturecheese

I agree with what you are saying regarding hygiene but apparently the nurses in my Rheumey clinic don't. I was wearing cotton gloves so that I don't have to touch doors etc in the hospital when I go for bloods and they told me I was going over the top. They said they know people that have been on Meth for 18 years with no problems. It makes you wonder what to think. I'm not having a go at them as they are very good but it does seem to be bad advice. The trouble is I now don't wear the gloves as I feel self conscious with them on when i go there. Luckily I haven't had any problems with colds etc yet.

stickywicket

I think it's very good that you're taking seriously the matter of 'bug avoidance'. Hospitals and doctors' surgeries must be some of the worst offenders. I heartily wish those who are aware of our compromised immunity would take it a little more seriously too before hugging and kissing us and only later announcing they are full of cold. It still happens to me sometimes after 18 years of meth.

But, cotton gloves? Is cotton any protection? I don't think so. I'm fairly sure that metal fixtures and fittings are and most hospital doors have them. I always try to use the metal bits and I always use the alcohol gel provided both going and coming.

I have read (I don't know how truthfully) that most bugs enter us via our eyes as we touch them, or near them, with our contaminated hands.Presumably cotton-clad hands can also pick up and transfer bugs.

I think we just have to take reasonable care without becoming so obsessed that we make our lives worse rather than better.

Rach101

I went to a meeting the other day and was chatting to the organiser who cheerfully told me she was just recovering from the flu! Fortunately I haven’t picked it up from her. Ive heard about getting bugs through the eyes too so I’ve been trying not to rub mine too much. Ive been infection free since writing this post and have been much more careful with hand washing and anti bac gel which I keep in the car.

dreamdaisy

I'm glad that things are improving for you, Rach101, it's a good habit to establish and pass on. We went to friends' on Saturday, one recovering from a cold so bad he had taken two days off work and a mum whose youngest has severe tonsillitis. The healthy don't think about the likes of us just as we didn't think of the likes of us before we started the meds.

Hand hygeine in't only for the winter months, keep the habit up year-round and hopefully infection contraction will be kept to the minimum. DD