Hi folks 🤗I've been struggling with lupus symptoms since I had Covid in October last year. I've had an appt with my rheumy who has advised an increase in Methotrexate (I'm on 17.5mg weekly at the moment). He's also recommended that I try the injectable MTX. Rheumatology however don't prescribe for me..dermatology makes the ultimate decisions. I'm awaiting a Demy appt so I thought I'd run it by you folks first.
Would you mind sharing your story with me if you've transferred from tablets to injections? How easy was it? Was it a straight transition from tablets to injectable? Did someone show you how to do it? Is it an EpiPen n if so could anyone post a pic of their pen please?
Being on 17.5 means I have seven tablets n when it increases its just more tablets to swallow so I am keen to give it a go. Rheumy said that it will help my uptake of the drug too.
Thank you for reading.
🤗💜🌈Xx
PS The pic is a chainsaw carved heron that hubby did recently and a friend said she'd love to see a pic of it
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Krazykat26
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Hi, I use the injectable methotrexate and have had no issues. Prior to taking the injection I was seen at the rheumatology department and instructed how to use the pen (I did try to get out of that being a retired nurse but still had to go) . It's a straight transition from tablet to injection. They're very easy to operate plus you actually get more of the methotrexate 🌹
Hi KKat. Does your husband ship??!!😂 Gorgeous. In the States and I was prescribed injections that I do myself. I took 2 doses and honestly had no side effects but only 2 doses. I just feel like I’m not ready for that upgrade😊 I was taught by my daughter in law/ veterinarian. It was not difficult. Best to you MrsMarigold
Thank you Mrs M 🤗I used to be a nurse back in my youth so I'll be fine with the injections. I've had dermy appt this morning and we're going to change to the jabs 💜🌈xx
You'll get responses about MTX injections over on PMRGCAuk and MrsNails there is our expert of all things MTX, It bypasses the stomach so reduces the gastric effects and is also that bit stronger as it is straight into the system, you don't lose anything through poor absorption. Some people get some injection site reaction but it doesn't seem to be common. Lots of people find the thought daunting and are then surprised how easy it is.
That sculpture is beautiful. Your husband must have had your kind nature as inspiration when he created it.
I know others will be more helpful than I about the methotrexate. Would be surprised if your dermatologist doesn’t think it is a good idea. My experience is that doctors respect other doctors’ expertise. Rheumatologists would know a ton about methotrexate for autoimmune conditions.
Interesting that I was watching a financial program the other day and the guests were described as having made probably the most significant drug company merger in history that would likely greatly contribute to helping patients. It was in immunology 💥- a whole new type of medication that had great results in inflammatory bowel disease with no side effects 😛. The conversation among the two CEOs and the interviewer was interesting because they all talked about the unmet need for drugs in autoimmune disease. This drug may extend way past IBD to include lupus and other diseases.
Drug companies take a lot of criticism but when a small company hits a home run and gets bought by a huge company like Merck to get the drug into actual human beings, it is so exciting. So cross fingers for phase 3 trial to be successful.
So many here, like you, are in need of breath throughs.
The drugs become available all over the world. We use drugs that are developed by UK companies and you use ours. Maybe that is one good thing about the size of these companies. They can produce lots of drugs! 😅
Looks like other companies have lupus drugs in their pipeline too. They are trying to find ways to more accurately target.
The big change seems to be that it is now important for these companies to have a share of the immunology market.
We have been neglected so long that we will take being the big hitters any way we can get there. 😂
Thanks meg 🤗Sorry I was gonna reply to u the other day but I completely forgot!! 🤦😹Car is wonderful thank you. She's a great addition to the family that's for sure. 💜🌈Xx
Hi, what a beautiful carving 😍. Yes I went from 20mg in tablets to the injections because of abdominal discomfort and it sorted that out and controlled my lupus better.
The rheumatology nurse showed me the technique.
I eventually went up to 25mg and found I got nausea for a few hours 2 days after the injection if I injected in the leg, and one day after if it was the abdomen and so I’ve just gone back down to the 20mg.
Hi there. I’ve been moved to injectable for a few years now. Supposed to help if you feel a bit sick with tablets cos it’s administered below stomach. No problems. Received lesson on how to do it by specialist nurse. Obviously dose is not adjustable. X
I transferred and found no issues at all. I have to take two injections; the MTX is the least painful. the needle is so fine, quick and easy. Plus you are not handling the MTX tablets which are Toxic.
Thank you Bonny 🤗Hope you're finding some benefit from the Gabapentin. I've been following your post coz I'm thinking I need something stronger than amytriptilline for peripheral neuropathy 💜🌈xx
Aw thank you kat. I've had to go drs today, turns out I have another uti . So maybe some of the drowsiness and sick feelings are symptoms of that. Not side effects of gabapentin. So another round of antibiotics.Sorry I don't know which of the medications are stronger but yes you must get more help if you are pain. X
Hi, I'm on 25mgs mtx weekly injections and its absolutely fine tho I find I can only inject into my stomach but I'm about 4-5 stone overweight so Ive got plenty of surplus fat to go for 😂😂The clinic will probably get you in several times to show you and make sure you are happy doing it before letting u go off and do it on ur own but u will get it quickly I'm sure anyway it is just like an EpiPen that u press and hold.
Thank you Sara 🤗I've been to dermatology today and we're gonna start training end of May 👍In regards to your fatigue post I was gonna reply but didn't have the energy 😹🤦 I've found that I've developed an 'inner voice' kinda like a kindly matron. When I feel fatigued I become quite childlike n have a childlike dialogue going on in my head. This matron coaxes me to do things, like a nurse would for a patient . I know you were a nurse..I was too 😉 So an example of this dialogue goes something like this:
Me...I've gotta clean my teeth but I haven't got the energy
Matron...well why don't we go to the bathroom n we'll see how you feel when u get there
Me..oh ok then!! 😤
Matron..see there you go you made it..well done!! Let's clean our teeth.
Matron...there you go now go back n sit down n you can have a well deserved rest. Well done..I'm really proud of you 👏👏👏
Treat yourself kindly always. Fatigue is no joke and it wears a girl down so be compassionate to yourself like you are to your children..you deserve kindness 💜🌈xx
That's so lovely 😍 and exactly how I would be with my pts 😂I think I probably do something similar subconsciously too!
I'm feeling super rough today really flu like and cold and my body and joints are killing me but did something so stupid 😬 .......
I go into my little girls class fri afternoon for 3 hrs since retiring to help out and I really shouldn't have gone, I rested all morning but I really wanted to go and didn't want to let them down (even tho they know if I can't make it I just have to say) and it is voluntary and its totally fine if I cant go.
Just waiting for my partner to get home so he can help me up the stairs to get into bed, I threw some nuggets into the oven for me and the kids earlier that's all I could manage better than yesterday mind u which was peanut butter sandwiches 🤦♀️
Aww sorry to hear that 😔it's awful when we really want to do something isn't it? We deserve a bit of pleasure but we have to pay the price afterwards. Take it easy as you can n I hope you feel a bit better soon 💜🌈xx
Hi Krazykat. I switched to MTX injections as I was having a lot of stomach issues with the tablets. As others have said, it's super easy, quick and painless. The rheumatology nurse showed me how to do it - training took about 5 minutes as it's all preloaded so you can't really go far wrong! At first I used my thighs for the site but got big bruises from that, so switched to tummy and no problems now. I do still feel a bit yuk the day after, but I think that's not uncommon. Works well for me though and allowed me to get off steroids after 2.5 years + osteoporosis diagnosis. Wishing you the very best of luck with it. x
Hi salzer 🤗This what I'm hoping for. I had managed to reduce prednisolone to 3.5mgs daily but since having covid I've increased it to 4.5mgs as advised by GP. I'd like to get off of them too. Thank you for your reply 💜🌈xx
I changed to injectable methotrexate and I’m on 20mg a week. I think it is helping and it is no trouble doing the injections. The rheumy nurse will teach you how to do it.
I don’t even feel it really. The only issue I have is that I’m hungry all the time. I think this may be a side effect of the injections.
Hi Krazykat26, firstly, what a stunning carving. Your man has talent. Yes, I went from oral Methotrexate to self injectioning. Was shown how to use it prior. Had no issues. However, I mo longer use Methotrexate as it did not help my disease. All the luck in the world is wished for you x
Thank you hopegalore 🤗He's chuffed with all the compliments from you ladies!! I'm sorry to hear methotrexate didn't help you..I hope you're in something more suitable now 💜🌈xx
I started on methotrexate tablets and had to go to 25mg injections to control my SLE flares. I found the transition from tablets to injection, quite easy. It saved taking tablets all the time! Your nurse should show you how to inject. I was happy to take the meds and go (because I am a nurse) however the injecto-pens are easy to use & pre-filled with the correct dose. Good luck 💚
Hi GT 🤗 Yes I agree with the too many tablets. On Sunday mornings I have to take 14 tablets!! I'm going onto injections at the same dose for now to see how I go. I'm an ex nurse too 😹💜🌈xx
Hi! I don't have Lupus(well... I have not been diagnosed with it-but as I read the posts here, you can tell what symptoms I have! ),but have injection of Methotrexate for Polymiositis. I was on 20mg of tablets for a good time, but moved to injection to possibly help with side effects(not noticed too much difference -always feel awful! ).
Recently been upped to a higher dose of 25mg due to a flair.
I have always been a needle phone, yet here I am, happily using 1 every week! 😆
I moved to the jab mid Pandemic, so I actually spoke to a nurse on the phone who told me how to do it!
Yes, it's an Epi pen, so very easy to use.
I would imagine now that you will be asked to do a jab with the nurse,to see that you are doing it correctly.
Basically, a nice fleshy bit of thigh. Pen at 90 degrees . Relax. Press. Wait for 10 seconds to dispense the drug& Hey Presto!😉
Hi Mustgetaroundtoit 🤗I love your name!! Thank you for telling me the technique..yes sounds fine to me. I'm ok with needles so can't imagine how it must have been for you at first..well done 👍👏👏💜🌈xx
Hi, Kat. I changed from tablets to injections of mtx a couple of years ago. I had no problems except for the first few months I felt very tired the next day. So plan the best day for you to take it. I’m on 15mg a week and it seems to be working fine - no new rashes, just the odd spot! 🤣. The injections are very easy to do, the nurse only had to show me once.
On a different matter I’ve just bought a wonderful contraption from Solbari. It’s SPF50, covers my neck and when I’m in the car I can pull it up to cover the side of my face. Yes, I look as if I’m about to rob a bank but who cares if it means I can drive when it’s sunny. Pic above
And the carving is wonderful. Your husband is very talented.
Don’t you just love Solbari products?! I tell people they have been life-transforming. With the hat with veil I can be out in the sun more - even went on a sail boat with no ill effects. Sunscreen alone is insufficient for me. My doctors have said there is nothing as effective as a physical barrier. Your scarf is pretty too!
By the way, if you like to swim, the swim dress is great.
Hi Barbara 🤗Thanks for that..I'm glad to hear you're doing well 👍Oh that is an interesting piece of kit!! My latest purchase is UV protective fingerless gloves. They use them in nail bars apparently for hands under UV lamps..they protect the skin. I've attached a photo..the gloves are actually purple but look blue in the pic for some reason. Take care n enjoy driving in the sunshine..still be careful though. 💜🌈Xx
hi Kat firstly what a talent your hubby has- the carving is absolutely amazing - I changed from tablets methotrexate to injectable with no issues at all - I’m on 25mg which is the maximum you can go on but since they have upped it I’ve really noticed a difference to all my lupus symptons and like other people have said you get an appointment and a nurse shows you how to use it - so sorry your really struggling at the moment - big hugs 🤗🤗🤗❤️
Absolutely nothing constructive to add! 🤞🏻the injectable MTX does the trick and calms things down, so you’re stable, after Covid wreaking havoc - for some of us it’s a persistent little ….🦠
I have to say, the carving is gorgeous, really striking - that’s a real talent. ✨
Hie , I’m sorry to hear you have been struggling. Hope the increase in methotrexate helps. I started with 20ml which were a lot of tablets to take. I struggled a lot with feeling nauseated coz of the medication , so my consultant suggested that I use an injection for it goes straight into my blood stream and also I inject myself only once a week same day. To be honest with you it was heaven sent.
It’s easier, i don’t feel so poorly just by enduring taking so many pills everyday. It was a straight transition and Yes they showed me how to do it at the hospital. I had been doing so well that I got it reduced to 12,5ml overtime. My consultant was shocked with how well I was doing and how I will always ask if I can get it reduced.
I have attached a pictured of one full and another used.
Thank you Gloriouslife🤗 You have indeed been very helpful 🙏 I'm glad to hear it's working out well for you. Well done for getting it down to 12.5 👏👏💜🌈 xx
Hey girl 🤗 I went for my first one this morning and all went well thank you. I've got another couple of sessions n then I'll be match fit. I was gonna reply to your post but I've been a bit busy. I'm so glad to hear the pred is helping some of your symptoms. This gives the doctor good indications as to what might be going on. Anyway it's progress at last for you. I'm hoping you'll keep us informed.
glad it went well 👍 thankyou and hopefully yes as its not before time and things just slowly worsening. got mri appointment through today too so at least somethings happening and yes will keep you informed 🤞 . hope its all good busy 👍 great to hear from you too and tell hubby hes a clever chap 👍 take care 😘🤗xx
I changed from tablets to methotrexate injections. The rheumy nurse taught me how to do it. It’s painless and easy so I would try it if recommended. I have no ill effects from it whereas the tablets made me feel terribly sick. Good luck with it and your hubby is VERY talented!
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