Hi all, my DAS assessment was all good and I've said before I am waiting for a treatment start date. I know that the biologics carry further side effects but what is it like living with a heavily suppressed immune system. I've been told stories that should you come into contact with people carrying serious infections; chicken pox etc you need to get yourself to a GP or ED ASAP. 

To be honest I'm getting a little bit worried as my current job means that at times I can come into contact with people that are likely to be carrying any sort of serious disease or infection. I know that I can limit myself to exposure but I can't stop it completely. 

My Rheumy is looking to start me on Cimiza I think.

Any help would be appreciated! 

Thanks all. 

22 Replies

  • You do have to be careful who you come into contact with. You don't say what you do for a living,but normal everyday life shouldn't be too bad. If you know there is an epidemic of say chicken pox it would be best to stay out of the way if you can. You will never be able to stay immne from everything,but common sense just needs to prevail.xxxxx

  • That's great, thanks for replying. I was guessing that would be the norm. Do you use biologics? If so, have you found that you suffer more illness than before you started taking them? 

  • No i don't,i was started om cimzia but had to come off it because of chest infections.xxxx

  • Hi

    This was a concern of mine before I started on biologics, particularly as I work with children. I have been on biologics for 18 months now and have not experienced any more colds or illness than I would normally do.My gp said our immune system is only "slightly" reduced when I asked about getting to see someone quickly with any problems,not sure exactly how true this is but I've been ok. I am more careful around people with coughs/ sore throats etc  and would probably avoid anyone with chicken pox if possible.

    As advised I have been more careful with hand washing, gel, making sure fruit etc is washed.

    Good luck with cimzia.

  • Thanks for the insight. I feel better about taking them, the leaflets and nurses only give so much info. The best source of info is from the people who take the drug! 

  • Your immune system will be suppressed, but not"heavily".  So it's not like you have to live in a bubble.  You have to be sensible, and it's worth taking extra care with basic hygiene like hand washing - which is the most effective thing you can do as most diseases aren't that contagious. 

    You don't  say how old you are, but it might be worth talking to your GP about the shingles vaccine before you start on them.   But as for things like chicken pox, try to avoid direct contact with someone with chicken pox if you can.  But you can't lock yourself away from the world.   If you find out after you've spent a day cuddling your grandchild that he or she has come down with chicken pox, then It's worth talking to the GP about some anti-virals. 

  • I'm 38 and don't have grandchildren just yet ha ha! Thanks for the reply. That was my main concern that once you take them you have to almost wear a mask and stay away from anyone with so much as a sniff or sneeze. That's the part that wasn't explained fully to me. 

  • Hi, I started on Cimzia five weeks ago, since I started my family, in turn, all came down with nasty colds, I was worried that I was going to suffer because of the Cimzia but I seem to have escaped it altogether.

  • I don't often get involved with questions about anti-TNF's or biologics because I haven't any personal experience to share but I have read about them & wonder if you've read this publication by NRAS. It may answer some of your queries & it's available as a hard copy (contact the helpline) if you prefer but this is the download

  • Thanks NMH

  • I have been on various biologics over the last 12 years and currently on Abatacept and have not had any serious issues.  I was more susceptible to sinus problems when on Enbrel but on others nothing.  I have been taken biologics whilst the children have been though school but that is not the same as working in a contact environment.  It is a case of being aware and learning to read your body and take action sooner than perhaps you would have normally.  They do recommend flu jab (yearly) and another one (a one off) but cannot remember name.   You will find your GP will probably not have much idea about these medicines and I tend to carry the information leaflet in my bag (at least then they have the proper spelling to find the drug on their computers).  Farm

  • Thanks Farm, I already have the flu jab due to other issues so will be more on the ball with annual jabs etc offered by my surgery. 

  • Interestingly my white cell count is higher now that I'm on Humira than it was before! So hopefully I'm not more susceptible to infections. I have been able to reduce my MTX, so that's probably why the white cell count is better. And even when I was on a higher dose of MTX I wasn't picking up many bugs. I do eat healthily and take fish oils, Vitamin D,  probiotics, and do lots of exercise.......cycling, yoga, swimming. All seems to help.

  • I've been on Humira for 2yrs now plus Methotrexate and Plaq and have only had one cold and it wasn't bad.  I do wash my hands often especially if I am in contact with people, shake hands, etc.  I go swing dancing once a week and that's pretty close contact with other people and haven't caught anything.  

  • Yes you need to do some protective behaviors but all in all the time that I feel a b it more human is worth it. During flu season I ensure I wash my hands frequently and always use a piece of paper to touch door handles and tap handles in public places. I have had some nasty bouts of bronchitis and I just get antibiotics, go off the biologic and then go back on when recovered. I am thinking of getting some masks to wear at work this winter because of all the people who come in sick, might help with the infection rate.

  • Do you find that when you come off the bio's that you flare or do you have enough in your system to ride it out? 

  • I don't flare but I do realise how much they help as the fatigue becomes very bad and my joints all start to swell and ache. The longest I have been off them is 4 weeks when I had my shoulder op recently.

  • I have been on various biologics for five years now. It hasn't changed my life and I've had very few infections that I would not maybe acquired anyway. You are not heavily immunosupreesed , just enough to stop your body fighting itself. 

    I do carry hand gel and wash my hands regularly and I have my flu jab. I regularly go to festivals and don't get ill, well I did get a good poisoning last year lol but the stall owner got done for that!! 

    I kid carry on as normal , try to enjoy the better Walcott of life the drugs give you  and try to plan an easy day  after  my infusion as it makes me s bit tired. 

    Good luck, be positive , we are so lucky to have these drugs to help I feel xx 

  • Thanks for your reply. All the replies have made me feel better about it. 

  • I too am on a biologic regimen and have worked as a nurse in a busy physicians office for the entire time I have taken it... I have had no illnesses and believe me I have been around a lot of germs. Good hand washing is a must!

  • I am currently on Enbrel and have been very happy with the results from this treatment.  I work in a hospital, so I know what you mean about exposures that can threaten the immune system!  We recently had staff that was exposed to the mumps!  Thankfully, I had them as a child.  I have had a sickness free existence since starting Enbrel over a year ago even though my family and co-workers have all been sick with various infections.  I contribute this to some new habits of mine.

    1.  I regularly clean my work area with anti-bacterial, anti-viral cloths.

    2.  I take vitamin C and drink an immune booster daily.

    3.  I use hand sanitizer before and after seeing patients and routinely during the day.

    4.  I try not to touch my face with unsanitized hands.

    The only thing negative thing that has happened to me since starting Enbrel is a pre-cancerous mole on my back that had to be removed.  Be diligent about checking yourself for suspicious spots that might need attention.

    All my best to you!

  • Thanks for an informative reply. It's given me a better understanding of biologics from everyone that has taken the time to reply. I feel better about taking them now. 

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