Steroids to treat Parkinson's

[Dana54]

I was diagnosed with Parkinson's in 2018, and recently I started having dystonia most of the day. I had been taking 2 tablets of Carbidopa.Levidopa 25-100 every 5 hours. At first, it helped me, but not now. It seemed the drug helped for about an hour then I would have the shaking and dystonia again. My Neurologist added the drug amantadine. My Neurologist admitted me into the hospital because Parkinson's had me shaking with dyskinesia and I had Dystonia unable to move at the same time. They gave me a steroid through an IV for 5 days and it has helped, but I feel dizzy and woozy

[Hikoi]

Never heard of giving an IV steroid for treatment in PD. I wonder if you have peak dose dystonia which would happen 1-2 hrs after taking levadopa. This would suggest you are having too much levadopa or too much each dose. You could try spreading the dose out - smaller amount more frequently.

[park_bear in reply to Hikoi]

Good catch. I took a look at the research literature and did not find anything very informative, other than the fact that peak dose dystonia is indeed a thing. This certainly fits the timing. Personally I am very levodopa sensitive. I take a low dose and I have a mild form of peak dose dystonia - my affected leg becomes stiff and hard to walk on.

Dana, if you decide to reduce your levodopa dosage do so incrementally. Do not try to quit all at once because it is likely to cause other problems. Best to get cooperation and guidance on this from your M.D. if they are willing.

[Dana54 in reply to park_bear]

park bear, thanks for replying. Your Parkinson's is so different from mine. you seem to be able to function without dyskinesia and very mild dystonia. I wish I was the same way. I am having a terrible time with all of this dyskinesia making me shake. I also still have milder dystonia about an hour after taking C/L. I may be more sensitive to levodopa than I realized, and more than the neurologist realizes. I kept telling the neurologist that I believe the C/L caused dystonia and dyskinesia. I never took any drugs, no aspirin or anything until I was diagnosed with Parkinson's. I left her a message last night stating I feel like I am over-drugged and told her I won't take amantadine anymore, and to lower the dosage of C/L. I feel like I don't want to take any medication because they have been giving me so much, but I will just have her lower the mg of the C/L and stop prescribing amantadine for me.

[Hikoi in reply to Dana54]

You may eventually return to amantadine because it does help with my levadopa iinduced tremor- like shakes which happen for a short while after each dose.

[park_bear in reply to Dana54]

Too much levodopa is definitely the cause of dyskinesia. Let us know how you fare on a lower dosage!

[LAJ12345 in reply to Hikoi]

I think peak dose dystonia is what was happening to my husband on the slow release madopar. He went back to the blue 62.5 capsules and at a much reduced dose and has come right again. I would try going lower but just slightly closer together if you need a bit more or a half dose of the rapid at the 2 hour mark to try and fill in the troughs.

[Dana54 in reply to LAJ12345]

Hello LAJ, thanks for replying. Yes, I think that peak dose dystonia is what I have, and dyskinesia also. I left my neurologist a message last night asking her to lower the mg of the Carbidopa/Levodopa and prescribe it to be taken closer together. I'm glad your husband has come right again and doing better.

[LAJ12345 in reply to Dana54]

It is like a miracle . We went to the movies for the first time in a year and he has returned to playing bridge at the club. He hasn’t been able to do anything much since about November. It shows you can reverse things again if you get the dose right.The other thing he has done recently as well was to go back up to the full dose of the Hardys daily essential nutrients (with extra vitamers) and Restore Gold, 2 of the supplements he has been taking for ages. He decided to decrease his amount of those half way through last year as he was feeling so good then, so potentially it could be reducing those that caused his downturn and increasing them back up that has helped his recovery again, once he had reduced the meds.

He is now back on the 12 per day Hardys and 16 per day RG.

[Dana54 in reply to Hikoi]

Hikoi, thanks for replying. Yes, the dystonia would happen 1 - 2 hours after taking levodopa It is still happening, but the dystonia is not as severe as it was before I had the steroids and the amantadine added. However, the dyskinesia is worse now. I will suggest a smaller amount of C/L more frequently. Thanks.

[Hikoi]

Dana

You are having 200/50 each dose. That is quite a hit. LAJ is suggesting 1/4 that amount 50/12.5 but I think that a bit dramatic. I dont think it would be enough but you need to feel free to try out a lower amount more frequently. Levadopa only lasts about 3 hrs in our body (sometimes less). Your neuro should know all of this!! That shaking and dystonia is awful, I know from experience. Might be time to get a new neuro.

PS amantadine is good but I think it increases the levadopa level in your body and is adding to your problem.

[JMSL in reply to Hikoi]

I've never heard it referred to peak dose dystonia before but this helps me understand what's going on with me a little bit better. I am on my 3rd movement disorder neurologist since I've been having unexplained stiffness in my leg (along with some extreme tremors or movements of my hand and foot). NONE of the 3 (all in different clinics) has used that term nor even agreed with me that somehow it's from the C/L. My current neuro is convinced that there's a psychological aspect to this so he's recommending some cognitive behavioral therapy (CBT) to address anxiety, which I'm willing to try but there's quite a wait to get in to see a psychologist! I have felt free to try mild variations of the prescribed dosage on my own but haven't found the sweet spot yet. I'm hoping that your advice here might help me, now that I have a better understanding of what might be going on.

Also note Dana54 - I tried adding amantadine but it made it worse, though I'm not sure the neurologists are convinced of that but it's my body so I said no more amantadine. I hope you can get back on the right track soon. I wonder if this is a more common occurrence in females so perhaps this reaction wasn't seen when Sinemet was first developed and tested (as I understand it, testing subjects were primarily men with PD, not many if any women). I am a female and I really do think that I've had some different side effects from C/L than the "norm" and I've had a hard time convincing the experienced movement disorder specialists that these unusual issues are side effects from the prescribed medicine!

[Hikoi in reply to JMSL]

JMSL

dystonia and dyskinesia are very complicated because they can be disease symptoms or levodopa side effects. They can be peak dose or wearing off symptoms as well so it gets to be a real challenge . The treatment differs according to cause. From the APDA site:

How dystonia is caused in Parkinson’s cases

First and foremost, dystonia can be a symptom of Parkinson’s disease itself. Particularly in young onset PD, foot dystonia may appear as the first motor symptom that is experienced. If dystonia occurs in isolation, the diagnosis of PD may only become clear as other symptoms appear. If dystonia occurs as the predominant symptom of PD, the patient and his/her doctor must decide how to treat it – either by starting dopaminergic medications to see if this helps the dystonia or by targeting the dystonia itself, possibly with Botulinum toxin injections.

Once medications for PD have been started, dystonia may appear when there is a decrease in brain dopamine levels, which could occur first thing in the morning before taking medication or when a dose of medication is wearing off. If this is the pattern that is noted, there are various strategies that can be implemented to decrease OFF time. Depending on when the OFF time occurs, these approaches may include taking a long-acting Levodopa formulation before bed, increasing the number of doses per day or adding a medication to lengthen the amount of time that a dose works.

Alternatively, dystonia can be caused by treatment with Levodopa. Readers may be aware of Levodopa-induced dyskinesias, which are rapid, writhing movements that can occur as a side effect of Levodopa treatment. When the movements caused by Levodopa are more sustained and twisting in nature than the typical dyskinesias, then they are referred to as dystonic dyskinesias. Dyskinesias (both typical and dystonic) occur in two temporal patterns – when dopamine levels are at their peak in the brain, typically in the middle of a dose; or when brain dopamine levels are rising or falling quickly, typically at the beginning and at the end of a dose. If either of these patterns are noted, there are various strategies that can be implemented. These may include smoothing out the Levodopa doses in order to prevent both brain dopamine peaks as well as rapid increases or decreases in brain dopamine levels. In addition, Amantadine or Amantadine CR can be tried to control both typical and dystonic dyskinesias.

It is critical to figure out the relationship between medication timing and dystonia to determine whether it is a symptom of OFF time or a side effect of Levodopa, which are essentially opposite scenarios. One of the best ways to do that is to keep a diary recording medication doses and symptoms.

[Dana54 in reply to JMSL]

JMSL, thanks for replying. Yes, I could feel that the amantadine is making me worse also, so I left a message for my neurologist telling her I will not take it anymore because it is making me worse.

[LAJ12345 in reply to JMSL]

The PD nurse seemed to me to be considering the side effects at the peak dose (rigidity) and end of a dose (freezing) to be the same sort of thing and calling it diphasic. But to me they look to be different caused by two extremes. She was saying take more and push through the rigidity and you come through it and out the other side if you take enough. I think that works if you are talking about the freezing rigidity caused by running out, but I doubt it would help the peak dose rigidity as it became so strong his throat was seizing up and he could not move at all from what seemed to me to be an overdose. I fear any more and he would have not been able to breathe. It was very frightening. And now at the much lower dose he is back to his previous self of 6 months ago so it was definitely medication induced suffering.

[Hikoi in reply to LAJ12345]

Dana and Laj just to add to confusion i have just been reading this. Very complex condition we have! I glean some new information out of most things I read this one told me more than i knew about diphasic dysk. Also note the relp btwyn dystonia and dyskenesia.

Box 1 Classification of levodopa‐induced dyskinesias

Peak dose dyskinesia

Diphasic dyskinesia

“Off” state dystonia

“On” state dystonia

Yo‐yoing

LID = levadopa induced dyskinesia.

Peak‐dose dyskinesias—These are the most common forms of LID and are related to peak plasma levels of levodopa. They involve the head, trunk, and limbs, and sometimes respiratory muscles. Dose reduction can ameliorate them, frequently at the cost of deterioration of parkinsonism. Peak‐dose dyskinesias are usually choreiform, though in the later stages dystonia can superimpose.

Diphasic dyskinesias—These develop when plasma levodopa levels are rising or falling, but not with the peak levels. They are also called D‐I‐D (dyskinesia‐improvement‐dyskinesia). D‐I‐D are commonly dystonic in nature, though chorea or mixed pattern may occur. They do not respond to levodopa dose reduction and may rather improve with high dose of levodopa.

“Off” state dystonias—These occur when plasma levodopa levels are low (for example, in the morning). They are usually pure dystonia occurring as painful spasms in one foot. They respond to levodopa therapy. Rare forms of LID include “on” state dystonias (occurring during higher levels of levodopa) and yo‐yo dyskinesia (completely unpredictable pattern).

[LAJ12345 in reply to Hikoi]

Oh my goodness! I guess he doesn’t have diphasic then as it did respond to reducing the levodopa and now he doesn’t have the peak dose rigidity at all.His peak dose when the dose was too high was choking him, but wasn’t spasms or wild movements, just a vice like grip like a blood pressure band being tightened around his throat and body he said.

His low plasma symptoms are freezing in place and trembling.

[Daisies22 in reply to LAJ12345]

Hello, just wanted to thank you for sharing this. I have been experiencing the same episodes when I am almost completely unable to make any voluntary movements, and this could go on for hours at a time. No-one has ever mentioned to me that these events could be caused by too much levodopa, and I was making things even worse by taking more levodopa in the hope that it would help, and it didn't. It's above and beyond me how a consultant Neurologists might not know this. I was only told that all PD patients develop "Parkinson's anxiety" and this is what I have and I should agree to be referred to Psychiatry for CBT.Thanks to your post I now have a better understanding of what is happening and why when I can't move or breathe. The next step is to try and get my Neurologist'attention and have a discussion about it!

[LAJ12345 in reply to Daisies22]

we have found the neurologist and his nurse not very receptive to the idea the problem is too much but our own experience tells us we are right. I find it very upsetting the numbers of people going through this. They pop up on here all the time, all the same story.

[Dana54 in reply to Hikoi]

Yes Hikoi, I suggested to my neurologist that I take a lower dose of C/L a little more frequently. I feel like I got worse after taking the amantadine

[LAJ12345 in reply to Hikoi]

No, I’m not suggested that low amount would be enough for Dana necessarily, just that her current amount might be too much. My husband seems to be a very strong responder to small amounts of any meds but not everyone is. But I am pretty sure one dose doesn’t fit all with any of these medications as we all come in different shapes, sizes, sex, genetics so it make sense to try more or less of anything to find your sweet spot. Unfortunately capsules are difficult to do this with if they can’t be cut.

[Marcia123]

I know a Doctor Who has Parkinson’s who iuses a steroid and is happy with that

[Hikoi]

DanaI do hope the neuro is weaning you off the steroid not abruptly stopping it. That could be dangerous.

Do let us know how you are.

[healthyheart7]

I have rarely used intermittent low dose of Prenisone (1.25 - 2.5 QD or QOD) for years. I take it when I get flare up tof my symptoms from the usual baseline. I definitely belive it helped me 9 years ago when I had bad dysphasia. Food, especially blueberries would feel like they got stuck in the back of my throat. Prednisone at that time I feel helped me and I have had no recurrence since then.A simple way to test this is to do a MRI looking for inflammation off and then on steroids

I am well aware of the side effects of steroids. I am not advocating the use of steroids, other anti-inflammatories can be used ie supplements and MRIs can be performed to see what works

At some point, I have tried over 30 different supplements and I can not tell you what works and what doesn’t work

[Hikoi in reply to healthyheart7]

Thanks very interesting

PS: 5 days IV sounds extreme doesnt it?

[healthyheart7 in reply to Hikoi]

Who is respect to the 5 days of IV steroids. It depends on what you are treating. type of steroids and dosage.