Emma7855: request for help with Lamictal withdrawal symptoms

[Emma7855]

Thanks @Altostrata. Yes, Prednisone. I let my doctor know, and she said I could try updosing to 55 mg, since that's a 10% cut of the original dose of 60 mg (as recommended by SA). Nevertheless, she wants me to try getting off within a month. 

 

I've been on 50 mg now for two days. How long should I expect it to take for my body to stabilize on the 55 mg? Is there a possibility that 55 mg would be too much of an increase? Unfortunately my doctor does not understand tapering and PAWS the way that the moderators of SA do.

 

Thanks again for your help -- I sincerely appreciate your insights. 

Edited November 7, 2023 by Emma7855
Added extra thoughts.

[Emma7855]

Hello - I want to make sure I fully understand the concept of updosing before I make any changes to my medication dosage. If you develop WD symptoms after a dose reduction, are you safe to return to the previous dose, assuming only a few days have elapsed? Or is the previous dose now considered too high? Thanks. 

[Altostrata]

Sorry, we don't know anything about tapering steroids. Suggest you go by the same principles that we follow with psychiatric drugs -- slow and gradual. Don't taper until your prior withdrawal symptoms have completely settled down.

[Emma7855]

Thanks @Altostrata, I appreciate it. I updosed to 55 mg and I think I'm feeling a little better (knock on wood). I'll stay there for the time being.

[Emma7855]

Hi - Is there a page here that explains how to handle an adverse/paradoxical reaction to an updose? I see this helpful page on reinstating (https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms), but it doesn't contain much information on updosing, other than to lower the dose in the case of an adverse reaction. I'm just trying to determine the appropriate next step to take, whether that be returning to the previous day's lower dose of 53.5 mg or somehere in between that and the updosed dose of 54 mg (for example, I see the number 1/20 of CT'd dose referenced in regards to reinstatement).

 

Apologies -- I know that since my current situation is not related to a psychiatric drug, I cannot receive specific advice. I'm therefore trying to understand the concepts so that I can troubleshoot on my own.  

 

Thanks so much! 

[Altostrata]

Rather than tinker up and down with your dosage, you might stay at one dose until withdrawal symptoms fade, then taper more gradually.

 

Please ask your doctor to look more closely into tapering prednisone so your doctor can assist you with your taper. FYI https://www.drugs.com/medical-answers/good-prednisone-taper-schedule-3570111/

[Emma7855]

That makes sense. Thank you so much for sharing that link.

 

I've been keeping a daily log, and I've noticed that since updosing to 54mg from 52.5mg, I've been getting intense symptoms right after dosing that last 6-8 hours. I'm still experiencing the WD ones too, unfortunately. I'll stick with 54mg for the time being; is the idea that the adverse reaction will gradually fade along with the withdrawal symptoms?  

 

My doctor is insisting that I come off the Prednisone ASAP, which is why I was trying to expedite the tapering process. I'll just have to stick to the 10%/month timeline for the time being, unfortunately. It's so frustrating that my body is still this sensitive 4 years after withdrawing from psychotropic medication.

 

Thank you @Altostrata. I have sincerely appreciated your advice over the past few weeks. I would be lost without you. 

[Emma7855]

Sorry, I meant "paradoxical reaction" rather than "adverse reaction" in my previous comment.

[Emma7855]

I just realized that I'm now also getting paradoxical reactions to the Trileptal and Lamictal, which I previously tolerated without issue and whose doses I have not changed in years. I'm also reacting to food. What a nightmare! At this point, I would have rather lost my hearing. I was just trying to get off this Prednisone ASAP, since I know it's not good to be on it long-term.

 

I assume that if I keep all doses consistent for the time being, the paradoxical reactions will gradually fade. 

[Emma7855]

Hi @Altostrata -- I was wondering if I could ask for your advice. I'm still in the process of tapering off Prednisone and am having a challenging time with it, since my body considers it to be a psychiatric drug. I realize that Prednisone is a steroid, but I figure the concepts are the same.

 

Before Saturday, I had been taking 43.5 mg at the same time everyday without experiencing any ADR or WD symptoms. On Saturday I went down by 1mg, immediately developed WD, and so took that 1mg two hours later. Since then, I have consistently experienced a paradoxical reaction (heart racing, tinnitus, etc.) that immediately manifests itself when I take the drug; it usually lasts 3-4 hours. I also now experience interdose withdrawal (Prednisone is eliminated after 22 hours). I'm wondering if these new symptoms will fade over the course of a few additional days/weeks if I hold the dose? Or should I take the paradoxical reaction to mean that the dose is too high and I need to reduce it?

 

Thanks so much. I really appreciate any advice you could offer.

[Altostrata]

Hello, I am no longer providing peer counseling on this site.

On 11/7/2023 at 4:56 PM, Altostrata said:

Sorry, we don't know anything about tapering steroids. Suggest you go by the same principles that we follow with psychiatric drugs -- slow and gradual. Don't taper until your prior withdrawal symptoms have completely settled down.

 

I don't know any specifics about tapering prednisone anyway. It's not a psychiatric drug. Please take to a doctor who is familiar with issues of tapering steroids.

[N2deep]

This doesn't really help, but I just wanted to say that while talking to my psychologist about my trouble tapering the drug I'm on, he likes to tell me about his really tough time taking prednisone. It really does sound like a psychiatric drug, along with all the weirdest symptoms. It rattled him psychologically and for many months after he stopped taking it. So I sympathize with your situation. There must be places around the internet that cater to people dealing with this and can put you in the right direction, because the way he put it, it isn't exactly uncommon. Though I think his issue was more an adverse side effect than WD. If I talk to him again soon I'll ask him about that.

[Emma7855]

Thanks @Altostrata. I've appreciated your help over the years and wish you the best in your SA retirement. 

[Emma7855]

Hi @N2deep -- I really appreciate your posting that info. Hearing that your psychologist had a hard time with Prednisone makes me feel a little less alone, and I'd love to hear more if you do talk to him again about it. I did some research, and Prednisone acts on serotonin, GABA, and epinephrine, so I guess that's why I experience WD symptoms when trying to get off of it.

 

The whole thing has been a nightmare. I too have long COVID (I saw from your signature that you have it), and Prednisone made my symptoms go from mild to ultra severe, and it gave me ME/CFS, POTS, MCAS, and CCI. I'm insanely sick now and have to go on disability. Meanwhile I'm still on a high dose because of how hard it has been to get off of it, and my hormones have all been affected. I'm going to have to do a very fast taper now because I've developed pain in my bones, so I'll soon have to deal with both severe withdrawal and long COVID. I suspect the two will just amplify each other. I'm absolutely terrified of how much sicker I'll get. 

 

How are you managing?

 

Thanks again for posting here.

[N2deep]

Emma, I'm really sorry to hear you're dealing with all that. That sounds really tough. Is it possible your bone pain is unrelated to prednisone? ... Back when my grandpa was alive he was on prednisone for like 30 years straight. My mom told me a funny story about this.

So you were able to get down from 54 to 43.5 without problematic WD symptoms? When did your LC symptoms get much worse?

[Emma7855]

Thanks @N2deep. I had WD symptoms originally when trying to get off of it in November, and I quickly realized that I could only handle the smallest drops. The problem is that because this is a steroid, I'm actively ruining my body while taking it. And then as I've gone down (or stayed on it?) my long Covid symptoms have gotten progressively worse. I lost the ability to sit up, and I develop post-exertion malaise very easily. I've been bed-bound since December. It's horrific. 

 

How are you doing?

 

I really need advice from the moderators here on what to do, since I think I kindled myself after the latest drop. I'm getting much more intense side effects from the Prednisone now, I assume some sort of adverse reaction? I don't know whether to hold or to continue tapering. @Shep or any other moderators, would someone please be able to offer some insights? Thanks so much. 

[N2deep]

I'm so sorry Emma. I was bedbound for a few months, and I got better. Also, right after I was out of that situation, my doctor told me to halve my dose and while I had horrid withdrawal symptoms, my LC did not get worse. So have hope.

It seems that it's widely known that one should slowly taper prednisone, if one searches "prednisone withdrawal symptoms", "prednisone tapering" etc.  ...So it may be not be that hard to get a doctor to listen.

 

I really hope you're feeling better soon.