Going through a period of no medication for mum

NickyMoo

Hello all.

Mum is 66 years old today and has had rheumatoid and osteo arthritis for many years. She has gone through various treatments and Methotrexate was really good for her, until she developed interstitial lung disease/ILD. She has never smoked in her life, so we assume it's just bad luck or maybe a side effect of methotrexate.

About 14 months ago she was taken off of methotrexate because of the ILD and was left without any medication apart from ibuprofen/paracetamol for two months until they prescribed Hydroxychloroquine at the minimal dose but she suffered with nasty side effects which included sloppy stools and sometimes not managing to get to the loo in time, also her legs were often swollen and water retention which may or may not have been related to the Hydroxychloroquine, but all started at the same time. I think colitis was listed as a side effect of the medication. Her specialist wanted to put her on a higher dose but she resisted due to her being frightened the side effects would get worse.

She phoned up the team at the local hospital in Kent and they agreed that these tablets weren't working well for her. They have prescribed some other tablets, an 11 day course, to "flush out" the hydroxychloroquine which hasn't get arrived in the post but should arrive tomorrow hopefully, she was told to stop taking the hydroxy on Monday.

They've made her an appointment for late April at the arthritis clinic but she's hoping that they can start her on some new medication before then as the symptoms of arthritis without any medication are quite crippling. She can't see to her own needs after a few weeks if this is going to be the same as last year.

They're suggesting putting her back on Sulfasalazine which she had years ago. Apart from having orange wee and the odd flare up she was okay on it, but methotrexate was better, but interstitial lung disease wasn't so great.

At the moment she's been four days without arthritis medication and she'll be at least another 11 days before the Sulfasalazine minimum dose starts (possibly up to a couple of months if she has to wait until the end of April to see the specialise if she can't get the prescription here quicker) and I seem to recall it was 1 tablet a day for the first week, 2 tablets second week up to 6 tablets a day on the sixth week if all goes to plan. She already has big aches in her shoulders.

Sorry for the looooong introduction, but I'm mainly here for advice on what to do in the interim when she will have no arthritis medication apart from paracetamol or ibuprofen. She's really not very good on steroids (they help the symptoms but she doesn't sleep, suffers from paranoia, sees people following her which may be related to the medication or sleep deprivation) so I'm not sure what the other options are, although she has manage to get some codeine prescribed form her GP. So she'll have off-the-shelf pain medication, codeine and a warm home. Otherwise cold turkey.

I've googled non-medical treatments for arthritis but the results appear to be aimed at US "The Man is watching you" anti-vaxxer movement and seem to be geared towards people thinking that drinking de-ionised water will cure cancer.

We know that arthritis medication works as she's used it for many years and it really does help her.

I can certainly physically help her by doing all of the stuff around the house, assisting with cooking, getting meals ready, doing the shopping and all that stuff but does anyone know what other things might help in this transitional period between old medication stopping and the new medication ramps up.

I'm talking stuff that helps. Will massage help? I can pay for that. Will cod liver oil? No problem. I've got her an electric blanket for her bed, I've got her a heated throw for downstairs as that helps with the aches and pains. I've got her compression gloves as she likes them. I've got replacements for them when they stretch and aren't as good. I make sure she doesn't have to worry about the water, gas or electricity bills.

But what else can I do do help over the coming weeks? What haven't I thought of? I don't mind if it might be regarded as a placebo but if it helps her temporarily and doesn't harm her then that's a positive.

Thanks for any help you can give.

--Nick.

[Deleted User]

Hi Nickymoo
Welcome to the forum,what a lot your mum has been through and still going through,it's always tough watching your nearest and dearest going through great pain,we do have a contact number where you can speak to someone on the telephone it is 0800 520 0520 if you want to.
Everyone on the forum is friendly and understanding and will try and help in any way to make you feel part of the forum.
All the best Christine

stickywicket

Hi Nick and welcome.

In so many ways your mother and I are leading parallel lives. I, too, have RA and OA – RA since I was 15 (now 72) and OA because there was no decent medication for treating the RA back in '61. I, too, now derive great benefit from methotrexate (coupled with hydroxy) but, fortunately, I don't have ILD which, incidentally, can be caused by the RA alone.

It is, unfortunately, very common for people to have to go through a 'no meds' spell when moving from one to another, usually with biologics, but I don't really see why your Mum should have to as hydroxy and sulphasalazine don't clash. In fact, they're often prescribed together. I've never heard of anyone being given something to 'flush out a med' and I hope whatever it is works for her as your poor Mum seems to have so many problems with so many meds. By the way, I think everyone has orange wee on sulph.

I'm not normally one to advocate steroids as they're deceptive little monsters but they certainly can help in an interim situation. Was she on a high dose before? Usually quite a low one will help to ease things. It might be worth having a word with her GP. Just for the record, only the rheumatologist can prescribe Disease Modifying Anti-Rheumatic Drugs (DMARDS) such as meth, hydroxy and sulph (There are others) but the GP can prescribe NSAIDS such as ibuprofen, pain relief and, if necessary, steroids. Ibuprofen is not the best of the anti-inflammatories so it might be worth just asking for a change. Plus, if she's taking them regularly, a stomach-protecting med too as all anti-inflammatories can mess with the stomach if we're not careful.

The GP can also prescribe stronger pain relief than paracetamol and that's something you could investigate. Do you go with her to appointments? It often really useful to have a secónd pair of ears.

You write of 'off the shelf pain medication' and I see big red lights flashing. What off the shelf pain meds? Especially if she is already on NSAIDS (ibuprofen) and paracetamol. We have to ensure that any meds we buy in the chemist's or any herbal supplements we buy are compatible with our prescribed meds. Pharmacists are brilliant at explaining such things.

Frankly, I don't think 'non-medical' stuff helps much at all though exercises are vital – gentle, range of movement ones when stuff is bad, such as now, and more serious, strengthening ones when things are good. You will find some on this site but, if you could get your Mum to a physio, that would be even better as they could tailor them to her current needs. I don't know where I'd be without exercises. Not moving much, that's for sure.

You write of 'helping her about the house' etc. I get my groceries delivered. I ensure that the shelves I can reach contain the stuff I use regularly and the higher and lower shelves (I have a pathetic reach :roll: ) contain everything I only use occasionally. My kitchen is adapted so that my cupboards have drawers not shelves as that, too, makes me much more independent. Independence makes us feel so much better about ourselves and our situation so, even if the sulph works quickly (which I hope it does) it might be better to try to órganise things so that she can help herself rather than you doing them for her.

Having said that, I think she must, despite her physical limitations, be an excellent mother. Neither my sons nor my husband would be able to remember so much of my medical history. If any

I hope it all goes as smoothly as possible for both of you.

NickyMoo

Hiya. When I said "over the counter" medication, I meant ibuprofen & paracetamol which are available without prescription.

Mum's new prescription arrived in the post this morning which contained this 'flushing' medication as well as the Sulfasalazine so she doesn't have to wait for months at all for the new treatment, just 11 days!

The flushing medication comes in really colourful boxes and I thought it was going to be tablets but it was actually sachets. The hospital prescriber has written "Colestyramine" 8g TDS. I can find zero hits for that specific drug, but Cholestramine hits a lot. Maybe spelling isn't important for hand-written prescriptions.

I searched for Hydroxychloroquine Cholestramine and got... zero hits. Turns out mum was also taken off of Leflunomide recently and when I search for Cholestramine Leflunomide there are plenty of articles for those terms with "washout" after.

She's been prescribed two of these sachets three times a day. Notes online suggest that it should be taken an hour before other medication as it can hinder the absorption of other medication.

Two sachets in 150ml of water or thin soups, apple sauce style things but we used Bottle Green Plump Summer Raspberry cordial and water. You pour the two sachets on the top of the water and wait for them to turn into some really odd jelly for a couple of minutes and then stir it in. Mum hates it. Seems to get stuck in her throat and it has a really sandy texture.

stickywicket

Thanks for the update. It sounds pretty nasty, much like the stuff one has to drink before a colonoscopy. I really hope you get the desired outcome.

You write of 'notes online'. Does this mean you weren't given a leaflet with it? If not here are the notes from the reliable site drugs.com. https://www.drugs.com/cdi/cholestyramine-resin.html It seems a very strong drug. Note it's important not only to take it one hour before other meds but also to leave four hours after taking it before having other meds.

To bang on a bit more about meds – I understand about ibuprofen and paracetamol being over the counter meds but your Mum's docs should know if she's taking them. Ibuprofen isn't always OK for patients on DMARDS.