Worried re immune system and corona virus
Posted Wed 26 Feb 2020 4.37pm by Dmort
Please excuse my anxiety but I’m finding I’m increasingly worried about being on biological treatment at a time when corona virus is spreading the way it is. I’m fairly new to biologics, just a few months and not quite sure what to expect re compromised immune system. I realise would be at risk also with seasonal flu but having vaccine there seems less of a worry. Is it just me? Or anyone else worried. Thanks in advance.
Posted Thu 27 Feb 2020 11.31am by Lasttime (edited Thu 27 Feb 2020 11.32am by Lasttime)
Been on biologics for 8 years never had flu jab. Noticed i got flu and colds more than pre biologics. Never had any real problems last couple of years never really had any problems.
Then at the end of last year i got a serious chest infection never had anything before
had real issues and only just getting over it.
Think a lot will depend on if you are older more at risk. Keep a eye on local situation
A lot to think about if it becomes wide spread it will be time to decide
PS take a look at the blueberry thread
Posted Thu 27 Feb 2020 1.48pm by Dmort
Thank you for your reply. It’s the unknown which is quite a worry, generally I do keep well other than the psoriatic arthritis and psoriasis. Blood done recently too and all seems fine. I’m back at rheumatology soon so I’ll ask when I’m there. Hope your recovery going well.
Posted Tue 3 Mar 2020 1.16pm by Chelley (edited Tue 3 Mar 2020 1.24pm by Chelley )
My daughter is on cyclosporin and my husband is on humira and I share your concerns. I hope we get some clear guidance and advice soon.
Just to add, my daughter has had several nasty viruses since starting Cyclosporin and gets very poorly with them.
Posted Tue 3 Mar 2020 1.54pm by Dmort
It’s a big concern, I am very new to these drugs and really worried as to what effect something like this virus would have. I’m really considering stopping but will definitely seek advice at next appointment, maybe I’m overreacting?
Posted Tue 3 Mar 2020 4.04pm by Chelley
Completely understand Dmort. I shared my worries on a Psoriasis fb forum and it received hugely varying responses. Some were coming off their meds, others didn't seem worried. Some had been advised to only come off meds if any symptoms developed. My daughter has a derm appointment toward the end of the month so will be good to talk about it there. She's 20 so not a child and has to make her own decisions but atm it's hard to know what to do for the best.
Posted Tue 3 Mar 2020 4.59pm by Dmort
I’ll maybe take a look at some other forums Best wishes to your family Chelley.
Posted Wed 4 Mar 2020 10.38am by Daniel
Probably a silly question, but does psoriasis make you immunocompromsied given it is an autoimmune disorder, or is this down to treatment type only?
Posted Wed 4 Mar 2020 12.42pm by Dmort
I’m not sure about this, I would tend to think it’s the treatments, but others will say that in any autoimmune disease you are susceptible due to the way our immunise systems work I certainly never ever gave it a thought until I started these treatments.
Posted Sun 8 Mar 2020 4.44pm by Sizzy
Our immune systems are a complex thing. We have 'dodgy' immune systems by just having psoriasis or psoriatic arthritis but I don't really think the experts really know what that means. I've read that we do have greater risk of cardiovascular issues and fatty liver along with anxiety and depression though.
Whether this means we are more likely to get Ill is also unknown. Factor in biologics and i suppose it could complicate things further. However, most biologics now target specific t cells so I'm wondering if that perhaps doesn't put biologic users at much greater risk of some illnesses? I think ask at your next appointment but do not expect a straight answer. They can only base a reply on data gathered and would rarely give a personal opinion. Anxiety is a normal part of have autoimmune issues, but we are all different and our bodies all react differently x
Posted Sun 8 Mar 2020 7.54pm by Dmort
Thanks for reply. I have been reading up on biologics, not sure if I’m any the wiser! As you say our immune systems are not straight forward. I’ve an appointment coming up soon so will definitely be asking. Certainly anxiety plays a big part for me!
Posted Sun 8 Mar 2020 9.41pm by Chelley (edited Sun 8 Mar 2020 9.42pm by Chelley )
An update, after doing research my husband, an office based police officer, has asked if he can work from home due to being at increased risk of complications from Covid 19 if he was unlucky enough to catch it, due to being on humira. He spoke to 111 and they said his concerns were legitimate and he should speak to his GP and occupational health and see if he can work from home. I'll keep you posted about what his gp and occ health say. I'm now wondering if my daughter, a college student on cyclosporin, should do the same.
Posted Mon 9 Mar 2020 7.50am by Dmort
Thanks for the update Chelley. If your daughter has the option to study from home might be well worth considering.
Posted Mon 9 Mar 2020 6.17pm by Susie22
Hi... I was going to ask the same question! I am on Methotrexate and Imraldi ( Humira ) and just wondered what the guidelines are for those of us with suppressed immune systems re the coronavirus.
Posted Mon 9 Mar 2020 6.54pm by Dmort
Hi Susie22. It might be best to speak to your nurse/rheumatology, I personally am really worried and considering stopping for now, however I will see rheumatology first.
Posted Sat 14 Mar 2020 9.55am by Mac
I'm not worried about talking my meds for PsA at all, life is not great without them. I have had first hand experience of that over the last couple of months sadly.
It takes weeks/months some times for these drugs to have an effect (depending on the individual), there's no way i'm stopping mine.
Posted Sat 14 Mar 2020 11.12am by Sizzy
Hi all. Might be worth keeping an eye on the IPC (international Psoriasis Council) website x
Posted Sat 14 Mar 2020 7.32pm by Emma
Hi I’m sure like everyone one else this is such a worrying time. My son aged 13 takes humira injections every other week at 40mg, he catches cold with ease since taking this. Only I’m so worried and confused as to whether I should be sending him to school or not with this virus spreading so rapidly. My consultant advised to carry on following government advice. And his school said the same. Only I don’t think the government have gave any thought to people with lower or no immune systems. And will any future advice be to little too late for some. Anybody else in this position?? Would you send your child to a school??
Posted Sat 14 Mar 2020 8.08pm by Sizzy
It's such a tough decision. My child does not have any meds but I still worry. Would the school consider isolation (I know not nice for him) or perhaps accept your fears and let him study from home. Its bleak times and the added worry will cause anxiety. I'd be very surprised if schools were open for much longer anyway. I work in London and my firm has split the workforce into two. Half will from home one week, then in office the following week, the other half alternate. Their thinking is less risk I suppose.
On another note. I used to delay my humira shot at any hint of infection when I was on it, and it still worked. Longest delay was 9 weeks. Having come off it last may, my skin was still clear for about 5 months. Flared now though. I'm not suggesting you follow that though.
Thoughts are with you x
Posted Sat 14 Mar 2020 9.47pm by Dmort
It’s a real worry. I understand closing schools is a big undertaking but I can’t see how they can put it off much longer. If your son can do his work at home I would go for this option. I’m planning to keep my kids of now.
Posted Sun 15 Mar 2020 8.31pm by Emma
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.
Posted Mon 16 Mar 2020 8.04am by Mac
Closing schools is a big under taking Dmort, closing them could see a big increase in the old catching coronavirus, as in grannies and grandads.
Posted Mon 16 Mar 2020 2.21pm by OhNo_NotAgain?
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.
Posted Mon 16 Mar 2020 3.28pm by Chelley
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
Posted Mon 16 Mar 2020 6.38pm by Sizzy
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.
Posted Mon 16 Mar 2020 7.11pm by Emma
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 noon 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 4.52pm 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 3.06pm 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
Posted Wed 18 Mar 2020 9.16pm 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 9.43pm by Sizzy
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!
Posted Thu 19 Mar 2020 8.54am by Gothiccrystal
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.
Posted Thu 19 Mar 2020 6.19pm by Sizzy
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 8.28pm 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 8.44pm 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 8.49pm 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.
Posted Mon 23 Mar 2020 8.53pm by Chelley
Posted Mon 23 Mar 2020 9.34pm by Chelley
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 10.35am 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
Posted Tue 24 Mar 2020 1.02pm by Lasttime (edited Tue 24 Mar 2020 1.04pm 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
Posted Sat 28 Mar 2020 9.13am by Sizzy
Guys, not sure if this will help but my clinic sent this to patients yesterday.
We are aware that many of our patients with severe skin conditions are on medicines that affect their immune system. If you are taking a medicine that affects your immune system please refer to updated government guidance regarding social distancing and shielding of at risk individuals. See www.gov.uk for guidance on shielding and protecting extremely vulnerable persons from covid 19. We are actively reviewing your case and we will be in touch if we identify you as an extremely vulnerable patient. If you have already received advice to shield please follow this until otherwise advised. Please do not contact us regarding your risk, we will be in contact with you. Please only contact us for urgent medical advice. This is an automatic message, please do not reply to this number.
Posted Sat 28 Mar 2020 9.31am by Gothiccrystal
Where about in the UK are you? I’ve still heard nothing
Posted Sat 28 Mar 2020 9.40am by Sizzy
Clinic is London. Guys and St Thomas
I actually had a call from consultant a few weeks ago as I had refused a delivery of new biologic due to coronavirus, and he agreed I should NOT start a new treatment as long as I felt I could cope with topicals x