Solumedrol

[Sadieschafer]

I am so thankful for the support I am feeling from everyone on here. I have been in the hospital for about 4 days on a solumedrol iv. I am still having numbness, tingling, weakness in the legs. I know everyone is different, but if anyone is willing to share their experiences with this, I would greatly appreciate it. I am just hoping I will bounce back somewhat sooner or later.

[Juleigh21]

Sadie, I've been on solumedrol 4 times since December 2014. Sometimes it worked immediately like the time I couldn't move my left leg and after one dose I could lift it and after a 2nd dose I could walk with a walker (and eventually on my own.)

There were also times when I didn't notice a difference for a month to 6 weeks. So very frustrating! I hate being on solumedrol and will only take it when I hit rock bottom of a relapse- which you have. Give it more time and get through the side effects of the infusions. When you reach the other side, hopefully you'll notice a BIG difference. I feel for you cause I've been there! Good luck! J.

[Sadieschafer in reply to Juleigh21]

Thank you...I just have no patience, lol. I'm just still feeling tired and weak along with the numbness and tingling...so frustrating. Thank you for sharing!

[angelite]

Hi Sadie,

Since I am not yet diagnosed I've never had any treatment for relapses. The symptoms you describe are common among us. My relapses come to a natural end after 2 - 3 months, hopefully the IV steroids will hasten the end of yours. Like you, I am v. impatient and often try to physio too early on ( while I'm still in the weak relapse phase ) which can be exhausting and disheartening. Far better to just do gentle exercise where possible until you feel brighter and stronger. My groin lymph nodes pop up for a few days towards the end of a relapse - it is a good indicator for me that my immune system is calming down and to expect improvement. I used 2 sticks for support during my latest relapse but am back down to my usual 1 and gaining slowly in power again. Just made it round a supermarket yesterday, first time since relapse - v. pleased with myself - another little milestone in recovery : ) I sleep loads during recovery - it is not wasted time as the body mends neurons while we sleep. My advice would be to do plenty of stretches, short walks if you able ( using whatever aids you need - 10 to15 mins round my local field with my dog was my limit ) and sleep when you need to. Use chairs to do personal care/kitchen chores to be safe and save on energy. Eat well, I also take a multi vitamin/mineral and omega 369 supplement ( for it's natural anti inflammatory properties ) when on a relapse. Now is the perfect excuse to watch TV, You tube, cruise Ebay, listen to music etc to your heart's content : ) I have discovered a few puzzle game websites which have been enjoyable while I need to rest my body. If I lived on my own, I would order my shopping online while I was unable to get out and about safely and possibly employ a home help if I couldn't safely manage basics and a dog walker to keep my pooch happy : )

Everyone is different - I can only describe my personal experience. I hope that knowing others go through this and come out of the other side, some as good as new, others with lingering issues that can be worked round, helps you through this. Relapses can be a scary, uncertain and downright weird experience ! Accept how things are for now, be kind to yourself and look forward to regaining as much as possible in recovery. Keep us posted on improvements : )

Love, Angela x

[Sadieschafer in reply to angelite]

Thank you for responding, and shining a little light on the subject. I'm sorry you are having to go through this as well, without a diagnosis as well. Without being too nosy, can you tell me how often you have relapses- and if they treat them for you at all? Again, thanks for sharing your story 🙂

[angelite in reply to Sadieschafer]

Hi Sadie,

I've only had 3 relapses in the last 4 years that left some residual problems ( I'm now 48 ) and a handful of milder temporary symptoms at other times that completely went again. I can relate those 3 relapses to severe viral and infectious triggers. I'm in the UK - you need a definite diagnosis here to get the appropriate treatment. I am clinically suspected but not yet had all the diagnostic tests required. Our national healthcare system is currently struggling under the workload of patients so waiting times for tests are long.

MS is a very individual thing - each person will have their own pattern/length of relapses if they have relapsing, remitting MS. Others may be 'Primary Progressive', never experience a relapse but have decline in function over time. No one can know exactly how long a relapse will last, how soon they may relapse again or whether there will be any long term effects to contend with afterwards. We can only bide our time, ride out the roughest part and stay positive for a good recovery. You are in the thick of it at the moment - your nerves are inflamed and inflamed nerves cannot work properly, hence your symptoms. The inflammation makes you feel tired and unwell. Once that inflammation dies down ( hopefully sooner rather than later with the help of steroids ) and you start to feel better you should see some improvement. Be a patient patient ! : )) My legs and balance were a real mess during my last relapse - enough to worry me, who has been through similar twice before ! The improvement so far has astonished me in recovery ! : )

Sending all good wishes, Angela x

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[Iona60]

Sadieschafer I've been on Solumedrol many times over the last 11 years. Usually my symptoms begin to resolve when I'm on it. One time, when I was still having the same symptoms a week later, it was followed up by a oral steroid dose pack. For me, when in an exacerbation, the quicker I'm put on Solumedrol, the sooner the symptoms resolve.

[LISAANNE0309]

Hi Sadie,

Like other PWMS, I have had many Solumedrol infusions over the past 25 years. They have always been effective. Now, after 5 years of no progression or exacerbations, my symptoms flared. My neurologist recommended 3 days of 1000 mg of Solumedrol and said that I could take it orally now. And that it was just as effective as the IV form. Well I saw no relief from the spasticity and pain. I am going to take another 2 days of the oral Solumedrol this week; I took the first dose last night. I am so hoping for some relief from the spasticity.

Has anyone ever taken the Solumedrol orally?

[Elle61 in reply to LISAANNE0309]

I've taken prednisone + solumedrol over my 37 yrs battle. Watch out for your bones, mine are thinning from it. Prednisone is the oral form I believe.

[Sadieschafer in reply to Elle61]

Have they always helped?

[LISAANNE0309 in reply to Sadieschafer]

They have in the past. For a couple of years, I had one infusion every month to control the spasticity.

After these two additional doses, I will report back.

[Sadieschafer in reply to LISAANNE0309]

Thank you

[LISAANNE0309 in reply to Elle61]

This 1000 mg dose is called Solumedrol. It is a liquid and is dispensed in a syringe. The directions are to take it with a smoothie. I mixed it with about 2 ounces of orange juice and sucked it fast with a straw and then followed it with more orange juice. It has a very unpleasant taste.

Oral prednisone is dispensed as tablets and I have taken these for other indications.

I chose the oral form for convenience, a few minutes at home versus hours at an infusion center.

I have regular bone density scans to monitor for osteoporosis.

Thanks for the recommendation.

[Sadieschafer in reply to LISAANNE0309]

Thank you for sharing. Could you tell me how long it typically took you to recover after the steroids?

[LISAANNE0309 in reply to Sadieschafer]

I have never had bad side effects after taking steroids. Just a mild headache the day after the dose, and a bit of insomnia for 2-3 nights. Very thankful.

[Sadieschafer in reply to LISAANNE0309]

Thanks again....for your ms flare up subside after the steroids? I'm just wondering if I'll ever return to moving normally again..

[LISAANNE0309 in reply to Sadieschafer]

Well, my MS has slowly progressed for 20 years now. The first 5 years, I was in remission, then progression. From cane to quad-cane, walker, and power wheelchair since 2009. I have never returned to normal; many times, though, I did return to baseline. The steroids helped the spasticity, its associated pain, and a couple of pseudo-exacerbations caused by infections.

I can't complain about the steroids. I do believe that they have helped me continue with a fairly good quality of life. I have been a single mother to three boys, now men. I still drive with hand controls. I still work full-time as a research coordinator at a medical school. I travel several times a year, both driving and flying. There are the negatives of course. Won't go there now.

Praying that your recovery following steroids is swift.

[Sadieschafer in reply to LISAANNE0309]

Thank you

[Elle61 in reply to Sadieschafer]

With the solumedro usually felt better in about a week.

[Sadieschafer in reply to Elle61]

A week after you have finished? Or from the time you start them...I just haven't felt much relief yet, and am worried I wont

[Elle61 in reply to Sadieschafer]

I sure hope you are getting better.........if not I would call you Doc. Everybody is different , be patient, and try to stay positive .

[Sadieschafer in reply to LISAANNE0309]

I'm hoping you get relief soon!!!