Hey y’all!.
I mentioned in another discussion about going to get the modified Myers infusion, also called IV therapy. I had no idea what it was before my doctor suggested it last Friday. Basically it is a lot of vitamins(all the B’s, C, D) and minerals (calcium, magnesium, folic acid) (and more, but I can’t remember and gave my son the paper from the doc) and at the end glutathione is added. It takes about 30 minutes for the IV to run. The conditions and diseases that it can help are numerous! When I told y’all the time frame for the therapy, I had it incorrect. The recommended therapy is once a week (at least 3 days apart) for 8 weeks. Then it goes to every two weeks for another 8 weeks. Then to once a month or as often as the patient and doctor feel they need the IV therapy.
I was told most don’t really feel any difference the first infusion. That it usually takes at least 3. After my infusion, I felt a bit lightheaded. I was told it was from the glutathione. But Not really bad at all, just a little. After that passed, I felt like a surge of energy. Yes seriously! After we ate supper, I did feel a crash but honestly it wasn’t horrible. I was still able to drive home from 45 miles away and I’m still awake.
I’ll update every week after each infusion
Idk if it will help me but I’m hopeful. I’m praying it does for all of us!
Questions? I’ll try my best to answer them or find the answer if I don’t know it.
I guess your doc knows what she’s doing. The only thing that occurred to me was that it is meant to boost the immune system and ours don’t need boosting, they need calming down. But then the immune system is way too complex for me to understand, so simply thinking of our immune systems as hyper-active may be wrong.
Hi. I would love to hear more about it as I have multiple autoimmune issues including the psoriatic arthritis and lupus and I’m trying my best to stay away from the heavy duty meds. Most of them I cannot take because within two weeks Of the injections or the methotrexate I develop either MRSA, Staph or Or some other weird bacterial infection and have to go off of them right away. Thank you so much for sharing this!
@Tootles I have PsA and I’m having blood work for lupus done today. Dr. Said I tested positive for the gene that carries lupus. I didn’t even realize I could possibly have both issues I thought it would be one or the other … I’m sorry you have a hard time with the meds
Hey @Sybil. Thank you for your reply.
That’s something I didn’t think about. But on the list I was given of the conditions and diseases that it can help, psoriasis is listed, as well as inflammation.
Even though my husband was ill last night, I slept fairly well and I woke up earlier than usual and I didn’t have a “fog” for as long. Idk if it’s from the infusion or the prednisone pack.
My next infusion is next Friday. I’ll be done with the prednisone pack then so maybe I will be able to tell more if it helps or makes my pain, inflammation, etc worse.
Hey @Tootles. Thank you for your reply.
You’re welcome. I’m new here to this as well as to the infusion. I’ll try to find more information for you. However I did look for a while last night and all I could find was from doctors’ clinics that offer it.
Oh no! Bless you hunny! I understand. Being allergic to so much and having sensitivities to everything it seems, that is a fear of mine also. that’s one reason my gyno suggested it to me. And after yesterday, I realized there are several patients and their spouses that get the infusion. (Btw, My husband is signed up to be cleared to start getting the infusion too.) The RN that administered the infusion said she gets the infusion every week or two, or she can’t function as she needs to. She has to work 12 to 18 hours days and has fibromyalgia. I know fibromyalgia and psoriatic arthritis are different disorders/diseases, but they have similarities too.
Time will tell if it helps or not. I’ll update every week and more often if there’s reason to.
Hey @Mwitt
I’m sorry. I’m praying for you and @Tootles.
Sadly With doing research for PsA, I’ve found that having one autoimmune disease increases the risk of developing another one. I do worry about that being the case for myself too.
You both will be in my prayers.
@Tootles you’re very welcome!
Reliable sources for this is difficult to find. But hoping this one is. I’ll post more when you find articles from reliable sources, if I do find anymore.
Hey y’all. (@Sybil )
I’m not sure what is going on but for a couple of days after starting the prednisone pack, my shoulder and neck haven’t been giving me as much of a problem. The pain is horrible and back with vengeance today, right now actually! I May have just overdone it since feeling better than what have been in so long, and just a coincidence that I had the infusion yesterday. BUT then again maybe Sybil was correct in her idea that our immune systems are overactive, like just our immune systems have ADHD lol and “feeding” it certain things like stuff that makes it stronger isn’t the answer but makes it so much worse.
Idk really. But I’m certainly going to talk to my doc about it and before I get another one! Maybe she can adjust it for me to only the vitamins and minerals that will help with inflammation and muscle pain and such. Idk if that is possible but I’m going to ask her for sure. Seems the 800mg motrin and ice pack are finally working. Thank God!! I was almost in !! It hasn’t hurt this bad since before I had my first surgery on it in 2015!
I’ll let everyone know what I find out as soon as I can talk to her.
I really didn’t mean to alarm you, Angie. It’s early days with both the infusion and the steroids. Getting medication right does take a bit of time & my thoughts on the infusion were very tentative, possibly just something to clarify with your rheumy, just in case it’s relevant at all.
I would have thought that the steroids are what is most likely to help with pain at this point, but perhaps you’ll need a little longer before you can really assess whether they are helping in that respect. If the infusion is of use, I’d imagine it will just gradually contribute to making you stronger and fitter all round, hard to imagine that it’s a quick fix.
As I think you know, controlling pain is not the same as controlling the disease. For that, you will need a disease modifying drug to slow the disease down and reduce the risk of joint damage and many of us find that it is the biologics that work best. However, when PsA is well-controlled, pain is likely to ease off, I think that’s true.
There’s an urgency around pain, of course there is! But short of a general anaesthetic, I doubt any drug will make it disappear over night. You may need more investigation to ascertain the source of it, could be not all of it is from PsA. Some use Cognitive Behavioural Therapy to address pain, and physical therapy of some kind is usually very helpful too. Meanwhile, here’s hoping the steroids start to settle things down more reliably very soon.
@Sybil hey hun. Thank you for your help and support and guidance. no harm done. No alarm, well not now. Lol
I think I figured out what caused it last night. I’m hurting again tonight in the same places. I had to drive almost 2 hours one way today for my oldest grandsons bday party. I believe the stress of driving and the heat and humidity being up is the trigger for this pain.
800mg motrin and ice pack have helped.
I’ll try to remember all of that hunny. My memory sucks but I’ve got it on here if I can’t remember. Thank you so much!
@Sybil oh yeah I wasn’t going to miss it! But I think I may have to surrender the driving to someone else from now on.
I’d forgotten what the infusion nurse told us. Most people don’t feel any real difference or see any improvement for 3 or 4 infusions. So Idk lol I’m probably one of them.
Both nights when my shoulder was at it’s worse, I took supplements along with the 800mg motrin and using the ice pack. Maybe I need to get the infusion every 3 to 4 days instead of waiting 7 or more days.
I guess time will tell.
Hey y’all.
Today I get the 2nd infusion. I’m praying for a better long term outcome than last week and that it last longer. Yesterday I had a bad day. Migraine, dizziness, nauseated, neck and upper back pain. Thank God it all subsided late in the evening. But I’m woke up with back pain again. I’m not used to the upper back hurting. It’s usually the lower back. Praying the infusion will help it all.
I’ll update this evening or tonight. Hoping everyone has a good pain free day and night.
Hey y’all!.
Well the infusion went well. I made sure I didn’t overdo it after the infusion too. My wonderful husband cooked, actually grilled for us last night because I was already really tired from driving and grocery shopping and picking some figs at our friends house. Soon as I’m not so tired, which maybe today, I’m going on make preserves with the figs. Oh yeah! Lol
Ok I slept pretty good and woke up feeling better than I have all week. I’m still stiff a bit and my upper back is still sore and achy but honestly I think it’s from our old mattress.
Conclusion: I honestly feel better than I have all week. I didn’t wake up because of pain, which is an improvement. Even though my back does still hurt, it isn’t as bad as it has been.
I will call the infusion a success this week!
Hey y’all.
UPDATE
Third infusion was yesterday. I know I overdone it yesterday and paying for it today. But when I have energy and less pain, there’s so much I want to do.
I’m not sure if the infusion is helping past the day of having it tho. Jury is still out on that.
Hey y’all.
UPDATE
My husband is taking antibiotics for an infection in a tooth so we’re going to skip this week of infusion. I’m curious to see if I feel any changes compared with the last few weeks.
I thought it would be one or the other … I’m sorry you have a hard time with the meds
!! It hasn’t hurt this bad since before I had my first surgery on it in 2015!
