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    How fast did you see results after infusion?

    Hello everyone and I hope you everyone is feeling great!

    My long-term boyfriend has just had his first 1g a day for five days solu-medrol infusion last week. His last infusion was last Friday and he has been on the taper. He's very eager to feel normal again and feels as though he's not going to get better because it didn't happen right away even after a couple neurologists told him it will take a few weeks to a few months to clear up completely. Before his infusion, he experienced weakness in his legs, pins and needles, vision problems, balance problems. He's gotten much better since the treatment but not completely and is concerned since he's read online that some people get better almost immediately.

    Luckily I found this forum and I want to shed some light and let him know everyone reacts differently to it and sometimes it takes a couple weeks or even longer for everything to clear up. Would you guys or some of you be willing to share your story?

    Thank you all and god bless.

    #2
    I have had two three day treatments of Solumedrol this month and I have had no relief yet. This week starts the 4th week since the first round. Fingers crossed that something happens because I have not even seen a slight improvement.

    Best to both of you for a marked improvement.

    Comment


      #3
      I had a 5 day gig of Solu-Medrol and I communicated to him I wasn't "there". It was a giant bag, I think the nurse said 2500 cc's of fluid.

      He said to give it time, and I did. I am nearly back where I started with my first flare. I'm going in on Tuesday and imploring him for a second round.
      Dx: 2/3/12. 6-8 lesions right medulla/cervical spine. GLATIRAMER ACETATE 40 mg 1/19, medical marijuana 1/18. Modafinil 7/18, Women's multivitamin, Caltrate + D3, Iron, Vitamin C, Super B Complex, Probiotics, Magnesium, Biotin.

      Comment


        #4
        Originally posted by Sprite_Girl View Post
        He's gotten much better since the treatment but not completely and is concerned since he's read online that some people get better almost immediately.
        I think those occurrences are a bit like those ads where some smiling person testifies, "I lost 100 pounds in only 5 days!" or "After just 1 week I can bench press my entire house!" Then down in the fine print it says, "Results not typical."

        Some people with localized or milder exacerbations do report that they feel much better virtually right away. It happens, but it isn't typical. As your boyfriend's neurologists told him, it can take a few weeks to a few months for his symptoms to clear up. If his symptoms are widespread enough and serious enough to require 5 days of Solu-Medrol, it's possible that it may take awhile for them to resolve. Also, the longer he had the symptoms before starting the steroids, the longer it may take for them to resolve.

        The one thing I will caution about is the word "completely." Some exacerbations don't ever resolve completely and leave residual symptoms. I think that the more reading your boyfriend does, the more he'll see that longer recoveries are more typical.

        I have recurrent optic neuritis. I always start Solu-Medrol within 24 to 48 hours of the start of a relapse. But no matter how early I start the steroids, I never even start to see improvement until about the 3-week point. And then it takes maybe another 2 to 3 weeks to get significant resolution. That's more typical.

        Your boyfriend of course wants to get back to normal right away, but his array of symptoms more typically can take several weeks to resolve. Some of us get through our relapses by being prepared for them to last awhile, and sometimes we get to be pleasantly surprised when recovery comes sooner instead of later. So I hope it helps your boyfriend to feel less anxious about recovery if he knows what a more typical recovery is. I hope that for him it's sooner rather than later. And who knows, maybe he'll be able to bench press the house after only a week!

        Comment


          #5
          Hi Sprite,

          I did 5 days of Solumedrol late December 2011/early January 2012 (yes, I spent New Years in the hospital). I had just been diagnosed and my eyes were a mess--double vision, nystagmus.

          Some cleared up in the hospital...but it's only now (6 months later) that I'm starting to have almost normal days. I'd say I'm at 95% on good days. The rest of the time, I'm functional but uncomfortable.

          Comment


            #6
            Thank you all for your responses! @Redwings thank you so much for your detailed response. He's concerned about optic neuritis -- are there really any solid tell tale signs that it IS optic neuritis and if the doctor is treating him for optic neuritis are they normally certain that it is optic neuritis? When he was in the hospital he over heard his nurses and his doctor talking about him and optic neuritis. Can you give me a little more information about that and what to expect with it?

            Also, I don't know if you or anyone else experiences this but he describes his vision problems as "fuzzy, almost pixilated" and is as if there's something like a thumb print in the center of his vision, not that there's a black spot in his vision but there's piece missing.

            Comment


              #7
              Hi Sprite_Girl:

              The degree of certainty about your boyfriend's optic neuritis (ON) diagnosis depends on who diagnosed him and what criteria were used. Eye doctors (ophthalmologists and optometrists) are able to evaluate the bulk of the visual system and are skilled at diagnosing ON without needing specialty testing.

              Neurologists aren't able to fully examine the visual system, so must rely on specialty testing that sometimes doesn't provide confirmatory information. Sometimes they just miss cases of ON because they don't recognize the significance of the symptoms.

              In a person who's exhibiting several signs and symptoms that are characteristic of ON, it's not unreasonable to assume that concurrent visual trouble is ON due to MS. I think a lot of neurologists diagnose ON based on probability, not on full evidence. I can't think of any other reason why some neurologists diagnose ON over the phone without actually seeing or examining the patient.

              Sometimes that assumption is wrong. Further, I've seen several neurologists over the last 20 years and I've been both amused and horrified about how little they knew or understood about vision. I can only assume that crosses over into ON, too.

              Of the two general professions -- eye care practitioners vs. neurologists -- the eye doctors have the training and instrumentation that make them more likely to properly diagnose ON. However, I've come across inept eye doctors who couldn't identify ON if it wore an ID badge.

              If you google optic neuritis, you'll find out what the signs and symptoms are. The big three symptoms are loss of visual acuity, loss of visual field, and loss of perception of the color red.

              There can be a loss of contrast sensitivity also, but that isn't something a lot of people identify with, and it isn't a widely available test. A visual field test is fairly standard in eye care, but not in neurology.

              If the optic nerve head inside the eye is inflamed, it simplifies the diagnosis. However, that only happens about 1/3 of the time. About 2/3 of the time, the inflammation of the optic nerve is behind the eye -- inside the skull -- where it can't be seen. The eye has a completely normal appearance. That's what drives neurologists to do an MRI to look for ON. Unfortunately, many cases of ON (even severe ones) don't show up on MRI.

              The other sign of an optic nerve problem is a pupil abnormality called an afferent pupillary defect (APD), aka a relative afferent pupillary defect (RAPD). (You can google it for an explanation).

              Eye doctors have a lot of experience examining for APDs because they look at eyes all day. Neurologists can easily miss subtle signs of an APD. (Some of my neuros missed mine.)

              Plus, what an eye doctor can do that a neurologist or other doctor can't is examine the rest of the eye(s) to rule out other possible causes of the visual symptoms. All things considered, it's probably best if an ophthalmologist makes or at least confirms the diagnosis of ON.

              The treatment for ON is the same as the treatment for other problems from MS -- high dose IV steroids, which your boyfriend is already getting for his other symptoms.

              And ON goes the way of other MS symptoms. Some people get all of their vision back, some people get none of it back, and some get some of it back, somewhere along the spectrum of the two extremes. The Optic Neuritis Treatment Trial found that most people get most of their vision back, but many people have some small residual deficit.

              Sometime recovery comes quickly, sometimes it comes slowly. Generally, any vision that hasn't returned after six months has a small chance of returning at all. But there's still a chance, and it does happen. After my worst episode of ON, I permanently lost about half of the visual field in one eye. But in the part of vision that did come back, I had continuing recovery up to a full year later.

              ON can cause all kinds of acuity and field loss. It doesn't have to be a "black spot." The areas where I have field loss aren't "black" -- it's more like gray nothingness. I also have a constant sort of moire pattern through the entire field of both eyes. That indicates that the damage and loss of function aren't uniform across the nerves.

              I've had episodes involving pixilated vision as well. Other posters can describe different effects. Correspondingly, your boyfriend's description of a thumbprint in the center and a piece missing isn't unusual or unexpected.

              Your boyfriend can find out a lot more about ON, and his particular case, by being examined by a neuro-ophthalmologist. A referral might be necessary for him to see one, but he can be referred by his neurologist or general ophthalmologist.

              Comment


                #8
                Originally posted by Mable View Post
                Hi Sprite,

                I did 5 days of Solumedrol late December 2011/early January 2012 (yes, I spent New Years in the hospital). I had just been diagnosed and my eyes were a mess--double vision, nystagmus.

                Some cleared up in the hospital...but it's only now (6 months later) that I'm starting to have almost normal days. I'd say I'm at 95% on good days. The rest of the time, I'm functional but uncomfortable.
                The nurse at my Neuro told me it could take 6 months to feel 'human' again and this shocked me. But now that I know, I'll duke it out and be hopeful for the best. I had my first flare symptoms New Years Eve. By Feb 6 I was Dx and on my 5 day round of Solu-Medrol.
                Dx: 2/3/12. 6-8 lesions right medulla/cervical spine. GLATIRAMER ACETATE 40 mg 1/19, medical marijuana 1/18. Modafinil 7/18, Women's multivitamin, Caltrate + D3, Iron, Vitamin C, Super B Complex, Probiotics, Magnesium, Biotin.

                Comment


                  #9
                  Originally posted by Redwings View Post
                  If you google optic neuritis, you'll find out what the signs and symptoms are. The big three symptoms are loss of visual acuity, loss of visual field, and loss of perception of the color red.
                  Glad you mentioned that because I would have forgotten otherwise. He has loss of perception of a few colors actually. Not just reds. But we're definitely going to look into a neuro-ophthalmologist.

                  He went to a regular ophthalmologist and they told him everything looked great. Very interesting. I really appreciate you taking the time to write the lengthy responses, it's a lot of helpful information.

                  @LisaL77 -- I assume you had a pretty bad flare up since you went of the 5 day treatment as well? Like I said before he's very anxious to get back to normal.

                  I did have another question to anyone who's experienced it or can answer it in any way. Along with his other symptoms, he's thinking he has a pinched nerve in his lower back to boot. After the solu-medrol treatment and the taper he's gotten better everywhere that's he's had symptoms, except for one isolated trouble spot that's been acting up since he started gaining strength again and started walking more.

                  The trouble spot (weakness and pain) extends from his lower back (lumbar area) down the back of his left leg into his knee and ankle. He's gained a lot of weight since he wasn't very strong on his feet and couldn't get much exercise and since then, those back symptoms showed up.

                  If I'm not mistaken those are sciatica problems. But with all the MS symptoms it's easy to over think things and not equate it to simply a sciatic issue.

                  Does anyone have any opinions on the possibility of dealing with not only MS symptoms but also sciatic nerve issues? I'm aware you're not all doctors but like I said, anyone who's capable of answering or giving their two cents I would greatly appreciate it.

                  Comment


                    #10
                    With my last flare, the MS nurse told me that it usually takes about 6 months for all the symptoms to clear up but she also mentioned, as another poster pointed out - some of these symptoms may never go away completely.
                    Dx RRMS 2008/Kesimpta Feb 2023
                    UNbalanced Dog Trainer - Accredited pet dog training instructor

                    Comment


                      #11
                      Originally posted by Sprite_Girl View Post
                      Does anyone have any opinions on the possibility of dealing with not only MS symptoms but also sciatic nerve issues? I'm aware you're not all doctors but like I said, anyone who's capable of answering or giving their two cents I would greatly appreciate it.
                      I have absolutely no doubt that a person can have MS and spinal problems at the same time, and I don't even play a doctor on TV!

                      My first MS symptoms and a bad back episode arrived within a couple of weeks of each other. Since I'd already had lumbar disc issues a few years before, my physiatrist was the first doc I saw. Within a few months he determined that there was more than disc stuff going on, and sent me to a neurologist, which eventually led to my MS dx. In the mean time I managed to also grow a cyst in my spinal column, and while preparing for surgery a few months after the MS dx I went and had a stroke, just for good measure.

                      It seems hideously unfair, but it's really quite common to have multiple independent health issues at the same time.

                      Best of luck to you and your beau...
                      1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
                      NOT ALL SX ARE MS!

                      Comment


                        #12
                        I must say that my experience with solumedrol infusions was an extreme case, but my first experience with optic neuritis left me blind in both eyes. My vision came back within hours of the first infusion.

                        Comment


                          #13
                          Hi Sprite Girl:
                          I'm so sorry, but I misspoke about the primary symptoms of optic neuritis. They are 1) pain on eye movement, 2) loss of visual acuity and/or visual field, and 3) loss of perception of the color red. I left out the pain part. Although most episodes of ON are painful [pain on movement, behind the eye(s)], some aren't. (I've had several painless episodes myself.) I'm sorry I erred -- I don't know why I left that out.

                          Also, it's true that a concurrent spinal issue (other than MS) can cause neurological symptoms and problems. Those concurrent issues can complicate a diagnosis of MS, and/or make the management of the signs and symptoms difficult. I hope your boyfriend gets everything clarified and resolved soon.

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