Someone asked about Low Dose Naltrexone. - PMRGCAuk

PMRGCAuk

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Someone asked about Low Dose Naltrexone.

lemarie1 profile image
2 Replies

I thought I would post this on main site so that people can read. I have an unusual journey.

I have been on LDN for about 2 weeks now. I am not sure if it has helped but I think that perhaps it is along with the other things I am trying. I developed disabling PMR in late March of this year (2019). Started on 20 mgs Pred and now down to 6 mg. So that is 4 months to 6 mg. My blood tests for CPR and ESR were high when my PMR was diagnosed. When I got my tests just 3 days ago, they were now both normal. I also took high dose Acyclovir for a month at the beginning of this journey after reading an article about Shingles and PMR. I did get the Shingles vaccine about a year ago. I did both of these things on my own without Doctors approval and all I can say is I think this has been a pretty rapid improvement for this disease.One other thing that I will mention but that I don't know whether it might have made a difference is I have been a Migraine sufferer my whole life. Recently I also was given a prescription for a once a month shot of AIMOVIG which I took about 2 weeks ago. Maybe it is helping also. This is all I can tell you about AIMOVIG; Calcitow does Aimovig work? In your body you have CGRP (calcitonin gene-related peptide) and CGRP receptors CGRP attaches to and activates the receptor, which may play a key role in migraine Aimovig blocks the CGRP receptor so CGRP cannot attach to it Aimovig is the first and only migraine preventive treatment designed to block the CGRP receptor.So basically I think it blocks Calcitonin reception.Because I am taking so many things it is hard to know what is and isn't helping. I am waiting to see if the migraines come on less often. So far it seems so!!!!And lastly more than anything else. I pray for healing often. God is our healer.

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PMRpro profile image
PMRproAmbassador

I look forward to hearing about your journey.

However, I have to point out that your blood markers should be normal while you are on pred and that if the dose you are tapering to find, the lowest dose that manages the symptoms as well as the starting dose, is under 5mg then a speedy taper at first is not that unusual or difficult. You may find that 5mg is the point you have to stop - or, if you are lucky - it may be 1mg.

lemarie1 profile image
lemarie1 in reply toPMRpro

I did have a flare at about 6 and 1/2 mg about 2 months ago but went back up to 15 and then tapered somewhat quickly. I am going very slow now and tapering by 1/4 mg. I break the 1 mg tabs into 4 pieces. I hope I can just go and go down. I have not been having any real pain but I don't overdo it.

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