Methotrexate injection

[charmaineholmes]

Hi I was wondering if anybody on here that injects methotrexate had a reaction to it .I am covered in sores where I inject Dr's say it not the drug it's my lupus flaring up. Sorry for horrible picture I don't want to carry on injecting legs so painful if I knock my leg I scream out in pain. I struggle to walk to painful .thanks charmaine x

[Fennella02]

Gosh, poor you Charmaine, those look very angry sores. I can't say anything terribly insightful but I think I would be asking to try a different DMARD if it were me.

Someone far more knowledgeable will be along soon. I only lasted 5 weeks on MTX tablets and was changed straight onto mycophenolate when I started to tantrum. I sincerely hope that your doctors are keeping a close eye on you. Clare xx

[charmaineholmes in reply to Fennella02]

Thanks they are painful shown 3different Dr's & they all say the same thing keep taking your meds as they are stuggling with what to do next as I had most of the drugs they use & have reacted to the drugs.I'm see my rheumatology dr on Wednesday and if no plan of action I'm going to refuse to take anymore of methotrexate. I can't cope with the pain in my legs any longer & how they look .

[windless22]

Those sores need treating did u see your gp not just rheumatologist? Could be infected which gp would treat..especially as so painful skin is red can see that....gp would probarbly say inject different area.not a dr but suggest gp

[charmaineholmes in reply to windless22]

Hi seen 3different Dr's all said same thing . Fed up with them all seems none of them want to do anything with them .I see my specialist again on Wednesday if they don't sort it I'm going to stop the drug .x

[windless22 in reply to charmaineholmes]

Hi oh dear not good. could you not maybe be needing to see a dermatolgist?not very good do nothing when so painful.i can only support and say stopping suddenly isnt advised does your rheumatolgist have joint dermatology rheumatology clinic mine dose can book you in quick if does often very helpful.

[charmaineholmes in reply to windless22]

Hi I've see dermatology. Ita lucky that I have a high pain tollarance. X

[Elismom in reply to charmaineholmes]

Maybe infectious disease doctor?! 😊

[charmaineholmes in reply to Elismom]

I ask on wednesday x

[leannehowis]

I'm sorry I can't help but wanted to send you love as that looks so painful x really hope you get to the bottom of it x

[charmaineholmes in reply to leannehowis]

Thanks x

[EOLHPC]

Am so glad you posted charmaine & I agree with the others who've replied. Am feeling v concerned and am sending you a gentle hug. Take care 🍀🍀🍀🍀 coco

[charmaineholmes in reply to EOLHPC]

Thanks x

[MargaretGail]

I really feel for you, I'm no medical practitioner but surely they need treating as a separate issue?

[charmaineholmes in reply to MargaretGail]

Thanks x

[Lorelei]

Charmaine,

I'm so sorry you are going through this and are in so much pain.

Perhaps you might ask your rheumatologist why these sores are at the injection site if they are caused by a lupus flare and not by the injections. Wouldn't a flare cause sores in other places as well?

I took methorexate tablets once a week for two years. During that time, my joint pain decreased, my complement depletion went away, and I began to feel much better and had less fatigue. I wonder if oral methotrexate would give you some of the benefits of treatment without the sores and pain you are experiencing now?

I will be thinking of you, Charmaine, hoping that you will heal quickly and that your physicians will find a different way of treating your lupus.

Lorelei

[charmaineholmes in reply to Lorelei]

Hi I asked them why it's there &they said because you have I injected in to skin & lupus doesn't like it my skin is bad on face, back& arms .I was on tablet form but couldn't stop vomiting so they went for injections .x

[Lorelei in reply to charmaineholmes]

The methotrexate tablets did make me nauseous....

I took them on Friday night every week, then had to spend most of the weekend in bed.

I wish that there were a different drug you could take instead of methorexate, one you haven't already tried that would make you feel better!

[charmaineholmes in reply to Lorelei]

Thanks I was doing so well my lupus was in remission for a couple of years after having chemo drug cyclosimide but in may had my appendix out &since then it's just gone out of control nothing stopping it .

[Lorelei in reply to charmaineholmes]

😔

I hope that another remission is just around the corner for you!

[charmaineholmes in reply to Lorelei]

Thanks x

[Karynbrett]

Never had a problem with methotrexate. I'm a nurse and never heard of that before. I would get another opinion !!! You are using alcohol swabs right ?

[charmaineholmes in reply to Karynbrett]

Hi I'm using the swaps that come with injections. I seen different Dr's all say the same x

[Josieswolf]

Hi i'm sorry you are having such problems. Do you alternate your injection sites. Try the other leg. It looks like you are injecting in the same place. This can happen when using the same site. Your lupus may also be contributing to this. Contact the rheumy nurse they need to know and may change your meds. Are you on antibiotics. I think you should be. Don't do nothing your gp sounds pretty useless. Good luck.

[charmaineholmes in reply to Josieswolf]

Hi I do change legs the other is thr same .when i first started the injections I had to see nurse at rheumatology showed her & I have seen dermitolgist. They all said the same carry on with injections it's the lupus but if it's the lupus I'm aggregating it with the drugs.I'm not on antibiotics Dr's said they not going to do anything x

[EOLHPC in reply to charmaineholmes]

forgive me charmaine if i've missed this in your thread, but:

have any of your medics taken samples and sent these to a lab looking for bacterial & fungal infection in these areas?

if i had sores like these, i'd want them tested to ID the underlying causes...to me, there seems more to this than 'just' lupus.....I too think you may need antibiotics, but first an infective agent needs ID

XO

[charmaineholmes in reply to EOLHPC]

Hi I said that to dermitolgist to take a sample but he said no its the lupus so we leave it alone . But they not the ones with the problem .my mum came up to stay with us for a few weeks & she was in tears when she saw them . She's said that my grandma had these on her lower legs but Dr's never diagnosed what it was as in her day lupus was even less heard of then .x

[EOLHPC in reply to charmaineholmes]

this is tough! i do think you'd do best to persevere with this...find a GP who understands your concerns and ask about a second opinion from, say, another dermy or even a rheumatology lupus clinic? XOXO

[charmaineholmes in reply to EOLHPC]

Hi my mum looked in to st Thomas in london sent them a email with pictures but they can't help unless I make appointment which I have to pay for .x

[EOLHPC in reply to charmaineholmes]

Hmm 🤔 Am going to think on this...hard to understand why your GP can't refer you on the NHS to st Thomas's for a second opinion...thesame sort of thing our footygirl had to do up north....

[charmaineholmes in reply to EOLHPC]

Hi they didn't say on email about a referal I have to ask on wed se if that works at least I won't have to pay my mum said it was expensive. X

[Maggiet]

Bless you.

The wounds appear very sore indeed. What would concern me is that you vomit if taking methotrexate meds. Your body obviously does not tolerate this drug? I am not a DR but I totally understand your desire to stop the injections. Kick up a fuss! You must put your concern in writing along with pictures to your prescribing DR and to the CEO. Have you contacted Patient Advocacy Services (PALS)? If not, do so. Someone has to take responsibility and that should be the prescriber. You are not happy, who would be? It is time they listened to you and acted accordingly.

The above comments are my opinions for what I would do for myself, so please consider that, and make the decision that best suits you. I would not want you to follow my advice, just consider my opinion.

Wishing you well. Let us know how you get on.

[charmaineholmes in reply to Maggiet]

Thanks I will think about the pals x

[Maggiet in reply to charmaineholmes]

The reply above is not from me, Maggiet. I don't know what's gone wrong but I've reported it to admin that somehow someone is using my profile x

[charmaineholmes in reply to Maggiet]

That's not good x

[Elismom]

Good morning! I inject methotrexate and have for the last 4 yrs. i have had sores on my scalp. I do rotate my injection sites...left thigh, right upper arm, lower tummy, right thigh & left upper arm & round & round. i am also a nurse so it's easier for me to understand. This injection must be given subcutaneous (in the skin...NOT intramuscular...looks by the picture like u maybe r injecting in the muscle? Looks very sore. Is your thigh the only area u r injecting the mtx? Stay away from that very irritated, red area. Id rotate injection sites (arms & tummy only til that all clears up! I totally disagree w/ your doctor!!! Looks totally related to the mtx shots! U need antibiotics, my friend...especially if u r running a fever. If u start getting sores at your "new" injection sights, id get ahold of your dr. & tell him u want to discuss alternate med treatment options. Good luck to you my friend! 😊 Lisa.

[charmaineholmes in reply to Elismom]

Thanks sse dr on weds I think they don't believe it's the drug as it takes a week after injection to start flaring up .x

[vaderviper]

Charmaine, you can determine if it is indeed the methotrexate injection by 'challenging' a different site (on the other leg). If you get another sore on the other leg I would suggest you ask your Dr. about switching meds. To calm your "flares", has your Dr. considered mycophenolate, azathioprine and/or prednisone? No one should have to put up with this type of reaction.

Dr. S. (in the USA)

[charmaineholmes in reply to vaderviper]

Thanks other leg is thr same as I do the injection alternative each week . I have tried the drugs you mentioned &I reacted to them with rashes bad vomiting & diarrhoea. X

[vaderviper in reply to charmaineholmes]

Have your Dr's tried higher dose prednisone, decreasing over a period of time.........eventually taking only 5mg to 7.5mg daily as a maintenance dose?

[charmaineholmes in reply to vaderviper]

Hi I'm on 15 mg of prednisone at the moment

[Porky]

I get sores like these on my body, I have bechets and when I was seen at the London hospital they gave me cream for a staf infection and oral antibiotics also hibiscrub to wash with.

It helped.

Xxxx

[charmaineholmes in reply to Porky]

Thanks for that .x

[Patricia2015]

Poor poor you, those sores look very painful.

Please check this article on Methotrexate:

medlineplus.gov/druginfo/me...

It says: "...Methotrexate may cause serious or life-threatening skin reactions. If you experience any of the following symptoms, call your doctor immediately: fever, rash, blisters, or peeling skin..."

If you can't help from your doctors and you don't trust the situation go to the ER and tell you are in terrible pain (which you possibly are poor you) and you want to checked it out because of the serious or life-threatening skin reactions Methotrexate can cause.

I feel for you.

Take care of yourself even if doctors don't.

[charmaineholmes in reply to Patricia2015]

Thanks for site will have a read of it .seeing my lupus dr on Wednesday if they don't do something I will tell them I'm not having the drug any more .x

[Schumacher]

can not put up with that...no way, could easily become septic..good luck.

[charmaineholmes in reply to Schumacher]

Thanks I have had enough Dr's wednesday if they don't do something I'm not taking drug anymore. Too painful now can't carry on like this any more. X

[Terrier_Lady]

Hi, those sores look terrible, I feel for you so much. I totally agree that the Drs should be doing more and be sending you to regular wound care appointments as this shouldn't go untreated. I know a lady who gets horrible sores on her legs and she has to go to wound care to have the dressings changed everyday. I've been doing the injections for about a month now with no side effects at injection site. You can't even tell by looking at my leg that I had a injection a couple hrs after. I wouldn't want to say that MTX just doesn't agree with you because of the vomiting with the pill because I know many people at my infusion center that couldn't tolerate the pills but have done great on the injections. I did see the post from the nurse talking about making sure the injection isn't going into the muscle. I know my iv therapist showed us that and talked about that when they were teaching us how to start. They also gave me extremely small needles. Like tb needles. They said you don't need huge needles for this injection, said if the pharmacy tried to give us some big long needle not to use it. Is that a possibility? The other thing is I have Lupus Mastitis which is extremely rare but it's the lupus attacking all my breast tissue. I get huge pockets of fluid that I can't sneeze and feel them pop inside. When it's not as bad it feels like they are full of little hard bumps about the size of the tip of your pinky. They feel like bean bags as they are everywhere inside when it's not painful and then big swollen fluid filled lumps when it's bad. Anyways the reason I'm saying all this is in researching it I found that it's a form of what they call Lupus panniculitis or Lupus Profundus. That is when lupus actaully attacks your fat cells. When it's doing it in the breast they call it lupus mastitis. Anyways in researching this I found that only 2-3% have lupus manifest in this way. And there were only 30 reported cases of lupus mastitis. So I don't think many Drs know what to do with it. We are trying to figure out how to pursue it for me. But when I was reading about lupus panniculitis I saw images of people with sores that look just like your legs. So maybe do a google image search of lupus panniculitis and you will see people with similar skin ulcers like that. Googling it will also bring up a few medical journals on it but there isn't a ton of sites as it's not very common. I'm horrible afraid if we don't get it under control for my mastitis that I will end up with breast sores like the ones on your legs as one of the medical journals showed a woman with the dark ulcers like yours all over her breasts. 😖 I don't know if all this was of any help but thought it was some good info. Hope you find some answers.

[charmaineholmes in reply to Terrier_Lady]

Thanks I will Google it I hope they find some answers for you soon .take care x

[windless22]

Sorry hear hope find correct treatment soon not right way you been dismissed.