Will I get back to work?

[juliebover]

I work as a GP and have been off 10 months now and my Specialist has said I might never be well enough to return. Even if I'm in remission with my Behcet's, how do I tackle being immunocompromised when I'm seeing infectious people?

[bobthomas1962]

hi I know the feeling I had to retire early I worked as a nurse for 36 years it got to the stage I was off more than I was there but for my health both physical and mental it was the best choice I still suffer a lot cant see any end to it but I haven't got the stress of work on top of everything else I hope things work out for you its a horrible condition

[Hidden]

I worked in ITU with severely septic patients whilst taking Prednisolone and Methotrexate then Mycophenolate. I didn't have any problems with infections.

Is your treatment as good as it can be? Are you seeing someone who really understands Behcets?

[juliebover in reply to Hidden]

I'm waiting on an appointment at CofE in London. Am on azathioprine, prednisolone, colchicine and infliximab plus a load of heart meds. Don't know what the waiting list is like....I know I'm hitting rock bottom. NHS England want me to have Occupational Health assessment before returning to work but I know at moment, they would say I'm not fit

[Hidden in reply to juliebover]

If they triage the appointments appropriately then hopefully you won't have to wait too long.

The Vasculitis clinic at Addenbrookes headed by Dr David Jayne is great as well and there is a Rheumy in London called Dr Nicola Ambrose who works at UCLH who has a great reputation as well.

Your disease sounds refractory if pred, Aza and Infliximab aren't making much of a difference.

It's very difficult, work is a great distraction and it's important to stay active but I realise that holding down a job is sometimes impossible. I lost my job last year due to ill health, part of me was relieved I have to say. I volunteer for Vasculitis UK and that keeps me very busy!

[bobthomas1962 in reply to Hidden]

I've got a good consultant now I've been referred to Liverpool centre also going into hospital for a few days she's putting me on new meds and wants me closely monitored in case it goes wrong and being sent for another bone density scan been on20 mg presidione do 4 years which have caused catteracts which have been removed but without the steroids I can't function at all I'm going for a biopsy of my ulcers today see what happens there the professor I'm seek g told them3 years ago it was Bechet's but my other consultants did not agree some think I've mylodysplatic syndrome I've had 2 bone marrow biopsy which have been abnormal but not were they can give a definite diagnosis luckily I have a very supportive wife and family I hope you have as well its a big help I would love to work again but can barley manage to get up stairs at times hope all goes well with you and you can get back to work

[mtmunster]

I feel for you. I don't think anyone, be they of the medical profession or not has a right to tell you that you may never return to work. They simply cannot know that for certain. I've had a pretty rough 2 years (diagnosed neuro bechets 2 years ago, initially on the wrong meds) I'm now on methotrexate, infliximab and prednisone-tapering off. I went back to work last October on a part time basis (my third time coming back from long term sick leave). I work in legal for a large organisation. I wouldn't have the same exposure to infection as you but I do work with a lot of people. I refused to give up my career so I would encourage you to not give up and perhaps think about alternatives within your profession where you are not patient facing. Good luck to you x

[rooser1]

Ironically- Since being on meds and the what not, Ive only gotten sick once and it was a very mild nasal cold (so once over 5 years). Truly limited to the nose- and it was from me kissing my BF on day 7 of his cold (we did not kiss all week). People around me have had severe gastro bugs, colds, mono, strep, and the like as i work in a healthcare office too. I do not share any personal products nor drinks with anyone since being diagnosed (neither does he). I wash my hands more frequently and do not touch my eyes- nose- mouth unless i JUST washed my hands (im sure youre all on the know about this, Dr.) But honestly, I think unless someone sneezes in your face- I think were more resilient than we realize. I used to feel easily broken, easily contaminated, and my paranoia has been lessening over the years.

Focus on getting your energy back up. Worry about the infected later. Stress wont help you build your system up anyways.

Keep us posted and stay well my friend.

[juliebover]

Thanks so much for the replies....I don't feel in such a lonely place anymore.

[UKADMIN Partner Behcet's Syndrome Society]

Hi Juliebover, have you had your appoint through yet for London? We are just in the process of finishing a booklet for employers on Behcet's, let us know if you would like a copy. As per your initial question and as Behcet's can affect people in different ways it is hard to say whether or not you will be able to return to work. I do know of quite a few people who do manage to work once their treatment has stabilized their symptoms or when their flares have lessened. Some people are able to resume original hours, some take on reduced hours. It is very much a personal journey, with some shared experiences with others. Check out our Factsheets here. behcets.org.uk/information-... Also, we have a family weekend in the Lakes in June if yo would like more [e-mail]

[juliebover in reply to UKADMIN]

I would definitely like a copy...help people understand a bit. Referral for appt done but there is a 4 month waiting list. My local Rheumatologist is frustrated with the delays and has written to Prof Fortune to ask if he can give me Humira. I work as a locum GP as I'm not reliable enough for a employed role. Trouble is the indemnity which rules out any profit if working part-time....currently I'm better off with benefits. So desperate to use my brain again. I have a mentor who has suggested I could do some academic stuff for the Behcet's society....

[UKADMIN Partner Behcet's Syndrome Society]

We are looking for new Trustees at the moment! I am just about to post an advert on here. Also really need helpline volunteers so that we can get our helpline up and running again. I hope your appointment comes through quicker and I hope your Rheum get a quick response from Prof at London too. Email [e-mail] and I can send you application for Trustee if you are interested and also the Employer booklet when it is finalised. Warm wishes. x