Hi folks 🤗🦋I have successfully transferred from oral to injectable Methotrexate after a few teething problems I think I actually got the hang of it last Sunday! 😹
I have three injections left and am wondering how we reorder it. I was contacted by email after the initial referral from dermy and I was on the Health net portal. Are we all on this? I remember the dermy nurse telling me to contact them when I have four weeks left but I don't want to be pushy considering all the pharmacy troubles at the moment.
So my question is will they get in touch with me or is it up to me to reorder?
Thank you 🙏
Peace n blessings
Kat 🤗💜🌈xx
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Krazykat26
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Thanks JCZW 🤗It made me have a little chuckle too 😹I've emailed Healthnet (I think) I'm useless with all this cyber stuff n I'm brainfoggy today!! 😹Hope you're as well as you can be. Weathers weird here n it's playing havoc with the 🐺💜🌈xx
Ok carol thank you 🙏🤗 I've sent an email to Healthnet asking for advice. Hope you're coping in the weird weather. It's knocking me for six but I'm resting as we should 😁💜🌈xx
Hi. I'm actually just back from seeing the respiratory consultant. Although some of the numbers have went down he's happy enough to delay the next retuximab infusion which was great news. He's going to discuss his findings with my rheumatologist and hopefully he will concur 🤞. Although it's been a wet month here, I've found it quite humid. Don't know if it's just that or a combination of the weather and the ever giving SLE which like you is having an effect on me. We can only do what we can 🌹🌹
A very interesting question you’ve raised for me too as I think I’ll be joining you on the MTX injection very soon. I haven’t even finished my course of Pred yet (just stepped down to 5mg for my final week) and yet the rash is beginning to reappear on my upper chest and forehead!😩 So I sent photos to Rheumy and left a message on their Helpline and waiting to hear back. I’m sure they’ll tell me to start MTX which we’d already discussed would be injections for me because of my hiatus hernia and gastric problems.
Hoping you are feeling ok on the injections. Take care Doll. 🤗😘xxx
Oh no Spotty 🤗😔I'm sorry to hear the rash is creeping back. That kept happening to me too..every time I reduced the pred my rashes would return with a vengeance. With me it happened when I reduced from 10mgs down to 5..maybe were similar in that respect? The first immunosuppressant I tried was coclosporin n it was awful!! I was sick every time after taking one n I had to take them twice a day. They were huge silver capsules that I really struggled with swallowing them n they would get stuck in my throat /top of my chest!! 🤮😹When my dermy suggested we increase the dose to two tablets twice a day I very firmly told him no thank you. They didn't make any difference and in actual fact the side effects had caused me to get high blood pressure which I've never had before! It was me that asked him if I could try methotrexate as I'd done some research on DermnetNZ web site. I checked my type of rash n I do have fairly typical SCLE. The medication advised by the site as being the most effective treatment was MTX. It has worked wonders for me!!
Although I'm taking MTX in injection form now I'm still on the pred too by the way. I'm currently on 4.5mgs n my current dermy is not too concerned about it as she says it's a small dose.
I hope you hear from your rheumy soon. Maybe you could negotiate a slower reduction on the pred?
Any questions post on here hen n we'll get you on the jabs if you have to start using them. 😁👍
I managed to sort out my next prescription so I'm now getting a dab hand at all this stuff. Tomorrow I'll be having my next injection n I've promised myself I'm going to do it as well as I did last week. I think I'm being a bit heavy handed coz I keep bruising my thighs. Last Sunday I did it like a pro!! 🙌😜💜🌈Xx
It does sound like we are similar in that the rash returns when the Pred lowers to 10mg in my case or 5mg in yours. Interesting that you are still on Pred, albeit a very low dose, whilst on the MTX too. Are you on Hydroxy too? I’m on 400mg per day of Hydroxy at present but have decided to drop back to alternate days on 200mg and 400mg in line with what a few others on here are doing. I’ve been on 400mg per day since April and certain side effects are catching up with me. 🥴
That first immunosuppressant you had sounded a bit OTT! Was it a silver bullet for the wolf within do you think? Sounds horrendous whatever the reason for it was and with such dire side effects.😩 Good for you doing your own research and suggesting the MTX. The Dermy at our hospital, who I am still waiting to see, recommended MTX too (even if only for the summer months which I’ve never heard of before) and Rheumy agreed it is the immunosuppressant she herself favours for her RA patients.
Pleased to hear you sorted out your next prescription of the injections.👍🏻 Hoping tomorrow you succeed in giving yourself the jab as well as you did last week.🙏🏻 In the meantime thanks for all your reassurance and support. I’ll definitely put up a post if I have any more questions.
Thanks again Kat and take it easy with that jab tomorrow.😉
That's exactly what I called them "silver bullets"!! 😹They were horrendous!! Yes I take hydroxy too. Initially started on 400mgs then dermy tried to reduce me to 200mgs n I flared badly so I'm on the same regime as Barbara. I take 400mgs Mon, Wed, n Fri and 200mgs on the other days. Over the course of two weeks that's the equivalent of 300mgs per day. This works for me.
I'm very happy to report that this morning's jab went well 😁I'm definitely getting the hang of it now.
I've never heard of MTX just for the summer either..I take it all year round.
Hope you hear from your doctor soon 🤞Take care 🤗💜xx
Well done with your jab!👏🏻👏🏻 I’m dreading it as I’ve never had to give a job to anybody ever before. But I guess I’ll get used to it. If not I’ll know who to ask for tips.😉
Interesting what you said about flaring below a certain dose of Hydroxy. I seemed to manage well on 200mg per day but when my Rheumy tried lowering it to 200mg on Mon, Wed and Frid only I had a flare (the time Jessie and I walked around Derwentwater) which settled very quickly with a short course of Pred and Hydroxy back up to 200mg per day. Then last year my last Rheumy agreed to me trying 200mg on alternate days, ending with me being taken off it altogether when I landed in hospital in January with drug induced hepatitis (from Nitrofurontoin ) resulting in the massive flare in February/March which has never settled since. I put myself on the 400mg per day in April when the second rash of the year started up while we were on holiday in the Hebrides with wall to wall sunshine every day. 🥴 I doubled the dose because I remembered my old Rheumy doing that whenever I was going to very sunny and hot climes, and current Rheumy hasn’t objected to me doing that. But I think it is time to reduce it a little as I’m not feeling great after 3 months on that high dose. I’ll discuss it with Rheumy when they get in touch. I haven’t been abroad for 4 years and really can’t see it happening ever again. But never mind, plenty of places in UK to explore. 😁
I’ve enjoyed our discussion and hearing what your regime is. 👍🏻 👍🏻
When my Hubby self-injected Adalimumab, (for his RA), he had to contact his Biologics Nurse to reorder, then collect from the pharmacy at the Rheumatology Hospital.
I got him a tube of Topical Anaesthetic (Emla cream), to apply directly on his, sanitised (with surgical spirits) skin prior to doing the injection; Used a sterilised cotton bud, (dipped in surgical spirits but can use TCP, dettol, meths, hand sanitiser etc if not allergic/sensitive).
This ‘magic’ cream took the sting out of it, (covered with a small piece of gauze & micropore tape whilst it took effect). Emla is quite expensive for such a tiny tube but does last a long time kept in the fridge…. Ice cubes can have a numbing effect too but are a bit 🥶!
I’m a former Dental Nurse, so know it’s something regularly done in the dental profession, to slightly numb the gum before giving Local Anaesthetic..(not with Emla cream though, there is a suitable dental product!)….
Hope your Methotrexate injections prove effective for you 🌸
That's very helpful T-1🤗Thank you. I might invest in the Emla cream..will see how I go over the next couple of weeks. I do think I'm getting the hang of it. I used to be a psychiatric nurse n the injections that we mainly gave were oil based depot injections which you have a really strong hand to administer. I think that's why I'm being a bit heavy handed!! 😹It's ok though coz let's face it we're pretty used to pain in one way or another. This is subcutaneous injection not an intramuscular muscular one..I just need to adjust to the difference I think!! 😹I got an email back from the pharmacy managing these injections n they will contact me to arrange delivery of the next batch 👍
I became a Paramedic after leaving Dental Nursing so I get where you’re coming from ref IM 💉. Hubby decided he could do his own SubQ injections after me initially doing them….think he thought I was going to try & cannulate or intubate him 🤣
I’m not in the least bit squeamish, nor worried or fazed by any medical treatments/procedures but I know I just couldn’t inject myself! 😫 You’ve got way more guts than me & I take my hat off to you.
Great news about meds delivery service, hope all goes well for you x🌸x
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