So now, from worrying about a hydroxychloroquine shortage those of us taking it can worry about increased risk of complications should we catch covid 19.
Hydroxychloroquine and Covid 19: So now, from worrying... - NRAS
I started on it 10 months ago (I'm not on anything else). I've had my bloods done once since then. I've never had my blood pressure or weight/height checked by the hospital. CV health bothers me as both my dad and brother had heart attacks, the rheumy told me to see my GP about it, not had a chance since lockdown. I was told to get an eye test at the opticians. I don't feel 'checked' at all 😕
Then call your gp or rheumy and ask how often you should get screened in their practice . And could that be arranged xxx I have 6 uncles , 2 cousins, my dad, my brother , my sister all gave RA and some had heart conditions and my FP checks me yearly , bp pulse height weight sugars liver kidneys ecg and is generally very helpful x
That's really odd because you should have been given an appointment within 6 months of starting hydroxychloroquine for an in hospital eye check. I too misunderstood this and went to my optician but he told me most don't have the right equipment and I should be getting a letter from rheumatology, which I did. I'll get an appointment soon.
Hi. I’m on hydroxychloroquine. For the first 4 months it was fortnightly blood tests. Now it’s monthly. If you don’t get them done. The drug is stopped. As another contributor said, there’s also a yearly test at the eye hospital. The optician does not have the specialist equipment. I suppose it depends on which health authority you are under. Though the NICE guidelines should apply to all of England and Wales.
. If you live in the UK, you could try contacting the hospitals Rheumatology helpline, they should help you. Or contact the Rheumatology consultants secretary, they’re normally quite helpful. I’m no expert but I can’t imagine the monitoring and testing should vary that’s much across the health trusts.
Well it must be a b****y slow death. I've been on it for at least 15 years and haven't come over all dead yet. I know it's easier said than done, but I try not to stress about that particular aspect of things as I trust my doctors to know more than the tabloid press. Instead, I'm hoping that if I am unlucky enough to get the virus, the Hydroxy will help me get over it a little easier than I otherwise would.
An interesting broadcast by the NRAS last night on face book asking questions to a Rheumatology consultant who said there was some research going on Hydroxy as it may help , they will get supplies from a different source to us.
There is some suggestion that our drugs may protect us as it seems that fewer people in hospital are needing icu treatment.
Personally I'm limiting my exposure to the news and choosing the sources carefully. I hear 10 mins or so of Radio 4 news maybe three times a day, read the i most days but often just scan Covid articles rather than reading them properly and occasionally catch a few minutes of the 10pm BBC1 news. I take it all with a pinch of salt reminding myself that everything is coming through the filters of politicians and media and all of them have their own biases and agendas. I find that a little bit of healthy cynicism helps me to keep grounded.
I've been on Hydroxychloroquine for about a year; I've had regular blood tests but that's mainly because of the Methotrexate I'm on. I was told to have an eye check and found a local optician who does all the checks recommended so had a "baseline" reading taken with a view to yearly appointments although that's obviously off the cards for now.
I have a good GP and surgery which helps and have been lucky with my rheumy clinic too but I would contact them if I felt that I needed to have more monitoring, even if it was just for my peace of mind.
With RA you cannot win. I’m stuck right now between trying to clear up an MRSA skin infection and calm down my arthritis, or watching this infection take hold again - another antibiotic added to its list of those it’s now immune to. Dermatology want me to take doxycycline to clear up the infection, which prompts a phone call from rheumatology who tell me to stop doxycycline and get back on my MTX. 🙁
One thing the consultant was saying on the NRAS Facebook live the other night was about how things have changed/are changing in how treating patients works. On the plus side he was saying how the consultants and GPs were able to communicate much better and get things sorted more quickly.* Maybe with specialists from all fields working together on covid wards they will forge better connections there too, and communicate with each other about shared patients' treatment rather than us having to act as go-betweens. We can hope!
*May not apply with your consultant/GP of course!
I do know that after diagnosing the disease now, they hit it with everything they’ve got, as this prevents the joint damage being as great. In my day they had a softly softly approach and started with sulphasalazine (sp) to see if that worked. Once it stopped working, it was MTX etc etc. I’ve had a lot of surgical interventions, most if not all could have been prevented. Twenty years ago there wasn’t the option of biologics but I’ve heard of people getting them straight away now.
when I was still in denial in the early days after my diagnosis I was googling a lot especially about the ultrasound scan I had and why it is a better diagnositc tool over blood test...I happened upon information about the guidelines for treatment after diagnosis and it was THREE DAYS. That's how quickly things can progress.
DT? Oh, Donald Trump of course! Well, (assuming you’re from the States) you guys voted him in. 😀
Re your comment on hydroxychloroquine reporting, and the emphasis on its possible use in treating Covid-19 etc with no mention of current use for RA, I have to cut the media some slack here. What would the public as a whole want to hear about? Covid-19 being sensitive to HCQ, or RA patients who successfully take it?
What does concern me is the possible “panic obtaining” of the drug, with demand through the roof meaning that stocks run out for the people who need it and where there is proof that it works.