No letter.: I,ve had rheumatoid arthritis for sixteen... - NRAS

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No letter.

gradyjackjacob profile image
15 Replies

I,ve had rheumatoid arthritis for sixteen years and at the moment I,m taking olumient.I haven't received any letter to say I should self isolate although I have for the last six weeks ,I was wondering if I could go shopping.

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gradyjackjacob profile image
gradyjackjacob
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15 Replies
dawkin_S profile image
dawkin_S

Morning! Hope you're well today Gradyjackjacob :)

I am no doctor, of course, so I can only point you to the info we've had so far, which had been contradictory in parts!

Am I right in thinking olumiant is baricitinb? If so, according to the British Society for Rheumatology risk stratification guide, it looks like you are at moderate risk: rheumatology.org.uk/Portals...

My understanding of this is that you should either stringently social distance or shield. Personally I found this chart from Leeds Hospital easier to understand: leedsth.nhs.uk/assets/f6d9e...

In my opinion, I would say, if you can get someone else to go shopping for you, that would be best - better to be safe. :)

gradyjackjacob profile image
gradyjackjacob in reply todawkin_S

Many thanks for your reply.

AgedCrone profile image
AgedCrone

Ask your rheumy nurse..it will depend on your personal health situation,

listellor profile image
listellor

i would contact your rhumy nurse . i talked to a gp at my surgery (Not my named GP) and she said i could return to work subsequently two days later i had a telephone consultation with the specialist and she was horrified and said you should be shieding . Go with what your rhumy nurse says

gradyjackjacob profile image
gradyjackjacob

ok thanks for your reply.

Dolindocurmi profile image
Dolindocurmi

Yes l do if your worried wear a mask.

BoneyC profile image
BoneyC

Weigh up the risks, where do you live, busy city or small village? Would the shop you visit be a large bustling supermarket with a queue of people at the door, or a quiet corner shop with maybe 1-2 customers? Whichever it is, pick your time carefully, some supermarkets are opening early for the "at risk" and NHS workers, don't go an hour before lunch or dinner when it's likely to be at its busiest and avoid weekends.

Letter or no letter, the ultimate choice is yours.

I've had RA 50 years, received a GP letter last Saturday (4 weeks after lockdown) but have been out shopping, either in the supermarket "at risk" time or to a quieter shop with few customers, wearing an NHS mask received when I had bloods and gloves which I sanitise before removing and disposing of and then hand sanitise again before washing hands at home.

Miasnana profile image
Miasnana in reply toBoneyC

Your comments are very sensible, some areas are very busy and social distancing is difficult. A small village is much easier and people seem to be kinder.

gradyjackjacob profile image
gradyjackjacob

I,ve got a mask so I think I might venture out to the local small shop,thanks for your reply.

gradyjackjacob profile image
gradyjackjacob

Great advice thank you.

Troygirl profile image
Troygirl

I have been working every day since this started. I

take Planquil and 3.5mg prednisone per day!

No note from RA dr.

I think the most vulnerable are the elderly and people with obesity, diabetes and asthma.

dawkin_S profile image
dawkin_S in reply toTroygirl

From looking at the above charts, I think you are doing just the right thing, as Hydroxychloroquine does not put you at greater risk, and your prednisone dose is under 5mg a day - at least that's how I read it!

Some people here are classed in the high risk category because of taking more than one/combinations of medicine, or because of co-morbidities as you mentioned.

Troygirl profile image
Troygirl in reply todawkin_S

Prior to the Planquil I was on almost every single biological. None worked! Last one three months ago for 5 months was IV Actrema and 10-15 mg prednisone!

It was the worst last two years of my life. Actually a nightmare!

I think something is going on with the Planquil, I feel better than I have the last two years!! Thank God!

dawkin_S profile image
dawkin_S in reply toTroygirl

Well that's very good news at last, then! I hope it starts making a real impact on the disease for you :)

I've been lucky with the hydroxy/plaquenil - no side effects to speak of, and in conjunction with the methotrexate it definitely makes a difference. Are you in the United States? Over here in the UK the standard progression of drugs seems to be steroids, then add/switch to DMARDs, then biologics if the basic DMARDs don't work. So my path so far has been prednisone>hydroxychloroquine>

hydroxychloroquine + methotrexate. So far, so kind of good ;)

Troygirl profile image
Troygirl in reply todawkin_S

First thing I was put on was a combo of methotrexate AND Enbrel (a biological). Did nothing. Just more prednisone. Was on does as high as 25mg for months! Tried every kind of biological, the three kinds, IL-6, TNF and even the JAX inhibitor.

Nothing worked, just more and more prednisone. Wrists and hands flared every single day for two freaking years.

Even had Carpel Tunnel Surgery on both wrists to see if that would help. Nope

It was a nightmare and developed a Fungal growth in my sinuses (needed surgery), Cushing Syndrome or Cushingoid) from so much prednisone! On high blood pressure medicine now too!

Finally told my RA dr enough is enough. Want off this prednisone and off it now! Went to pain management because nothing would work except high does of prednisone.

Started 2mg of suboxone, Real CBD oil with the tiniest trace of THC, Motrin 800mg and now Planquil.

Seems to be working and finally down to 3.5mg of prednisone, soon to be off totally. Also lost 12 poulds! 10 more to go to be back to regular weight of 120!

Also my family has been bugging me to get new RA dr for 2 years, I finally did it and have an appointment with a new one this Friday! Nervous but relieved. The other one was a quack. My GP also advised me to get new RA dr. because no one should be on such high does of prednisone for 2 years!

Lets see what the new dr comes up with.

My question to her will be how can someone be in a RA flare for 2 years (in wrists and hands)

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