Thanks for the replies. It’s always a comfort to hear advice from others that understand our situation. My worries still lay heavy on me so I think keeping my son away from school for now would be best. Let’s hope the government spare a thought for everyone on these meds to give us some reassurance at the very least.
Emma: there are still a lot of uncertainties about the progression of this virus and the associated illnesses. Without more data and knowledge I do not see what reassurances any government can give?
Thousands die from flu every year, many of whom had pre-existing health conditions, or compromised immune-systems and there is not the same dramatic reporting in the media. I would s suggest to speak to your own doctor or specialist dealing with you.
Emma, I totally get your worry with my daughter going to college and being on cyclosporin. I wish they'd close them tbh. Take it out our hands x
3Posted Mon 16 Mar 2020 18.38 by Sizzy Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Whoever keeps putting thumbs down does not appreciate individuals worries and is judging. Not cool.
The whole situation is very bleak and people are going to worry. We are not all equipped to shrug worries off.
Personally I think keeping kids at school is a mistake, but they will close very soon.
Completely agree with you chelley and hopefully this will happen soon x I know this is not ideal for everyone but not everyone’s circumstances are the same. I think it’s good to share our worries and seek advice where we can. X
Posted Tue 17 Mar 2020 12.00 by Lasttime
i have a appointment on Friday strange , i have had two phone calls asking if i will be attending and three texts and its only Tuesday morning.
Posted Tue 17 Mar 2020 16.52 by Addick100 Ian, topicals, light, acetretin, fumaric acid esters (Nightmare!) Adalimumab.
I've just been in contact with my psoriasis clinic. They are saying to continue with your meds and they are still awaiting guidance from the government.
The British Association of Dermatologists website has some information regarding biologicals but it looks like they don't know what action should be taken at present.
Posted Wed 18 Mar 2020 15.06 by Lasttime
Things are changing fast just had phone call 4th this week appointment is being cancelled
doctor is going to do phone consultation.Wonder how that works with no blood test ?
Dont expect any person to person appointments in near future
2Posted Wed 18 Mar 2020 21.16 by danielbrown8319 36 yr old. had it since the age of 24. It can get pretty bad and I've tried most treatments, several of which worked
Just finding this forum - I share you anxieties! I'm a 37 yr old... been on humira since December. It has been great! Been on all the other treatments previously over the years...
This from Psoriasis Council - "For psoriasis patients diagnosed with COVID-19 disease, the IPC recommends physicians discontinue or postpone use of immunosuppressant medications. This is in accordance with established psoriasis treatment guidelines (for example, the European Dermatology Forum and the American Academy of Dermatology), which state immunosuppressive psoriasis treatments are contraindicated in patients with active infections.(reference - https://www.psoriasiscouncil.org/blog/Statement-on-COVID-19-and-Psoriasis.htm#).
Psoriasis Association: "As far as we are aware, if you take an immunosuppressant medication (e.g. methotrexate and ciclosporin) or biologics to treat your psoriasis or psoriatic arthritis, you are not at an increased risk of catching COVID-19, but you may be at extra risk of complications from the virus if you are infected. It is not necessary for you to stop taking your systemic/biologic medication, and actually to do so could cause a flare in your condition. If you do have concerns about continuing your medication, you should speak to your prescriber (e.g. dermatologist, rheumatologist, or biologics nurse) before deciding whether or not to stop your treatment."
I also heard on one of the government news conferences that people are higher risk include those that are normally recommended to get the normal flu jab. So that's me.
For humira, the advice to stop taking the medication if you catch covid-19 seems odd - humira it is to be injected every 2 weeks, and I presume the progression of covid-19 occurs over similar timeframes i.e. 2-3 weeks.
So based on the above, my instinct is to stop taking my humira. I've had periods of severe psoriasis for years and though its a physical and mental struggle at times I can cope (dead salt bath were my most recent saviour before getting humira!). I am prepared to 'welcome back' my psoriasis over POSSIBLE risk of complications over covid-19. But I will ask for a second opinion from my dermatologist to see what they think (who is great!).
On a more optimistic note, the fact the medical world doesn't know if psoriasis has any bearing on the impact of covid-19 is perhaps good to know.... Psoriasis affects nearly 3% of the population - so a fair sample size. If we were particularly more prone it would possibly have emerged by now? Who knows, perhaps our over-active immune systems actually benefit us!
Anyway, stay safe everyone and take care :)
Posted Wed 18 Mar 2020 21.43 by Sizzy Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Great post danielbrown8319.
If you are able to fully isolate (and I mean fully isolate) it would be ideal but none of us know how long the risk will be for. I'm due to start Stelara soon after coming off humira almost a year ago (fab drug for me but taken off it by neurologist).
I finally got the call from healthcare at home for 1st delivery this afternoon. I refused it. There is no way I wanted to start a treatment that stays in your body for 3 months (inject every 12 weeks)! She did seem shocked citing it is safe. Hmmm. Single parent, too much of a chance for me!
I am concerned. I work for the NHS and they just want me in work even though there’s so many people in and out of the office that hve travelled all over seeing patients. The hospital for my Biologics have no idea if we will be told
To isolate for 12 weeks. Everyone at work has said goodbye to their elderly parents for 12 weeks and I’m expected to go into work when I care and live with my elderly parent. The government need to state if we should be isolating and not ‘advising’ as employers won’t accept it.
1Posted Thu 19 Mar 2020 18.19 by Sizzy Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.
Hi all,
I had a call from my consultant total. He agreed with me that I should NOT start my new treatment at this stage if I felt I could cope with my disease with topicals. He did however say that if you were already on biologics, you should continue unless you show symptoms, where you should stop and not do your next injection.
I would think that if you inject biologics, you are in the at risk group and should be isolating. It would be irresponsible of your employers to insist you work.
I hope you manage to get this sorted soon xxxx
Posted Mon 23 Mar 2020 20.28 by Freeserve
What about taking a pneumonia injection. Will that help a compromised immune system ? I’ve had flu jab already. I’m on brodalumab (kyntheum).
Posted Mon 23 Mar 2020 20.44 by Chelley
A pneumonia vaccine doesn't help with coronavirus sadly but it's still good to have. Whether they will vaccinate now, I doubt.
Posted Mon 23 Mar 2020 20.49 by Freeserve
What about that pneumonia is one of the complications the covid can bring about?
I’m just so worried so anything to help I suppose.
I have found a chemist that will do privately.
My 20 year old daughter has been on Cyclosporin for 6 months, but it has started to lose effect as well as making her nauseous twice a day. Having already been on Methotrexate for 2 years prior to this the next step was to try a biologic, but the consultant said he'd rather she didn't start now due to Coronavirus. The immunosuppressant effect stays in your system for some time.
He said he'd be happy to start the ball rolling on light treatment but he thought it highly unlikely it would go ahead because of the coronavirus crisis. So basically my daughter who suffers very severely with P, will be managing on topicals for the foreseeable.
I wish all Psoriasis sufferers my very best wishes at what is a very stressful and disruptive time.
Posted Tue 24 Mar 2020 10.35 by Gothiccrystal
Will we get a letter if on immunosuppressants? Work occ health called and were like why aren’t you in and think I need to go back to work. Other people are off with their undying conditions and I live and care with elderly
Person
Posted Tue 24 Mar 2020 13.02 by Lasttime (edited Tue 24 Mar 2020 13.04 by Lasttime)
Got my text this morning
have a read of this while everyone decides what to do
Last week hospital rang me mon,tues,wed are you coming for appointment .yes
Thursday dont come consultant will ring you friday
Friday rings you need to go to doctors get blood test and drop flem sample off 20 miles
Friday Doctors hands me paper with blood tests i need give it receptionist i think you have a chest infection
After blood test you need to go to hospital for chest xray before i can give you anything
Receptionist put gloves on to take paper doc had just given me, get blood test done
Off to hospital another 20 miles x ray can you give me a idea if i have anything i need to see doctor about, no were not allowed
Will be two weeks before doc gets results were very busy
Oh well im sure my chest infection will wait
All that would of been done normally on friday that was cancelled
Thats now imagine in a couple of weeks god help the country
Take care
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