The Value of a Good Compounding Pharmacis... - Cure Parkinson's

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The Value of a Good Compounding Pharmacist, a True Story

chartist profile image
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Although I generally write about supplements, sometimes supplements are simply not enough and prescription meds can be beneficial in different forms that doctors and patients are sometimes not aware of. To ignore that fact is folly on the patient's part in my opinion. I am writing this true story to try and offer hope when it may seem that there is no hope in certain cases. A medical alternative of sorts that although rarely discussed, definitely deserves plenty of discussion!

The following is an accounting of a friend of mine who was at that point where there seems there may be no hope left and was considering an untimely ending.

I have a friend who is a retired RN and was diagnosed with the following health problems all relating to her neck issues of :

1. Cervical Stenosis

2. Bone spurs

3. Arthritis

4. Nerve Impingement

5. Numbness in her hands and fingers

6. Muscle loss and weakness in her hands, fingers and arms

7. Severe pain levels.

8. Very significantly reduced range of motion of her neck with great difficulty just holding her head in an upright position so she spent most of her days looking at the ground instead of straight ahead. This situation made driving impossible at times.

9. A generally miserable life under these debilitating conditions.

Since she is over 75 years of age and because of other health issues, her specialist told her that surgery was too risky a consideration for her and was not a viable option in her case to treat the bone spurs and spinal stenosis.

She lives hundreds of miles away from me, but I still tried to make suggestions to her on different ideas that might be of help to her, but as it turned out, she is so sensitive to even basic supplements that she was afraid to try most things or the ones she was willing to try caused her more problems. As an example, one of the tested supplements was oral and topical MSM, but she could not tolerate it because she said the bitterness was overwhelming to her and so she tried to use topical MSM, but she said even topically the MSM instantly gave her the same bitter taste in her mouth. She did have some muscle pain and cramp relief from mag oil, but this was ineffective for her neck pain which was mainly related to nerve pain, a difficult form of pain to treat effectively.

I ended up making many suggestions for her including homeopathy, but her sensitivities to most things or unwillingness to try some of the ideas I suggested precluded her from using them or took them off the table as an option. For me, it finally came down to recommending using two topical pain relievers just to make the pain bearable and help get her through the day with reduced pain and fatigue. I have written about these topical pain relievers previously on the forum. Her doctor did not seem to be able to offer my friend any help and instead referred her to a specialist who ordered an MRI and based on the MRI results referred her for physical therapy (PT), which actually seemed to worsen her condition as they wanted her to do exercises which she told me were impossible for her to do because she told me the pain from just attempting them was excruciating. She used up all of her PT appointments and when done she said she was worse than when she started. They included deep tissue massage, acupressure, a TENS machine and localized ultrasound, all of which offered her no relief and according to our conversations resulted in a worsening of her condition. Her doctor offered her no other suggestions for her condition.

At that point I suggested acupuncture as something she might talk to her doctor about for consideration. Her doctor said it was worth a try, but seemed to be losing interest in her case. The acupuncture offered no relief, but it did cause her blood pressure to rise sharply so that took acupuncture off the table. I have to admit that I had never seen anyone as sensitive as my friend was to different supplements.

At this point her doctor was out of ideas and the specialist she had referred my friend to for the MRI and a more precise diagnosis had no suggestions other than surgery, but he told her that in her condition and at her age, surgery was not a viable option.

Other than the two otc topical pain relievers I recommended for her neck and the mag oil for muscle cramping and pain in her hands and some areas of her back, she was barely keeping her head above water and I thought, based on our conversations, possibly losing her willingness to live.

I had only one idea left and was hoping that as a retired nurse, she might be willing to consider it. I told her to ask her pharmacist to refer her to a reputable compounding pharmacy, even if it wasn't local because they can just ship the medication to her, and then to ask to talk to the head compounding pharmacist (CP) and explain her condition and include some history and the MRI results in their discussion. I told her to allow the compounding pharmacist a couple of days to determine if he had any ideas on any topical he could compound for her that might relieve the nerve pain in her neck and help to relax her neck muscles. She did end up doing all of this and when he called her back, he told her that he had come up with 5 potential topical compounds that he felt confident would be beneficial for her neck pain and would help relax her tight neck and shoulder muscles, but he said that of the five possibilities, he felt that two in particular would likely offer her the most benefit. All of these compounds that he described to her had multiple active components and the topical application has made it easier on her system which is very sensitive.

At that point, she had decided that since her current doctor had no other ideas to help her, she needed to find another doctor to take over her case, but she was afraid that a new doctor might be as bad or worse than her current doctor or they might not be willing to write the script for the compounded topical.

I told her to ask the CP if he could recommend a doctor for her who would be willing to work with him and also willing to write the script for the compound he was suggesting to my friend. He answered her that yes, he could highly recommend a doctor who he has worked with regularly for years and that is the primary doctor that she switched to and they seemed to have a very good rapport with each other according to what my friend told me. Her new doctor was also willing to write a script for what the CP was recommending and told my friend that her patient's responses to what this CP had recommended to them were positive responses so this doctor and the CP together were offering my friend hope which her previous doctors had not. Both told her that they would do all that they could to make her better!

My friend got the compound as soon as her new doctor wrote the script and the CP made it up for her. This new topical is no cure by any means, but it is offering more pain relief than the two topicals I had suggested to her and it is allowing her to do some of the exercises recommended by the physical therapist. It may not seem like much, but for my friend it is giving her significant relief from the tremendous pain she was in and offering her hope for a better future. She is keeping me updated and her reports are much more positive than they were with her last two doctors and the PT! To me, the main point of all of this is that a good CP can offer options that many doctors, PTs and patients are not even aware of. The proof of this is that her last two doctors, physical therapist and acupuncturist did not suggest consulting a CP to her, but instead told her that they had no other ideas or treatments to offer to her. My friend is now at a state of feeling that she has a future instead of being on the verge of taking her life and she is able to do more today than just one month ago!

Even topically applied medications can have negative effects in the body if they are strong enough and absorbed well enough and in my friends case, she developed constipation which she was able to remedy by applying a strong mag oil solution to her abdomen. The CP told her that he had not previously seen this side effect from the compound he made for her, but was glad to hear that she had found a simple and safe remedy to the problem.

This is her story and I will update if she has anything to share. I hope this may be of value to people who may be in a similar situation that may seem hopeless. Her neck issues all seem to be fairly common and I think especially at her age. I also hope that her story might encourage people to look for and consider out of the ordinary solutions. She is a retired nurse, but she told me that she had no clue about the usefulness of compounding pharmacies which really are quite different than regular pharmacies which mainly fill standard prescriptions and don't do compounding. Her regular pharmacist, although aware of compounding pharmacies had no ideas to offer my friend either, but did recommend a good CP!

Art

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chartist
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11 Replies
park_bear profile image
park_bear

Good story. Compounding pharmacists are very good at creative thinking. I had a compounding pharmacist tell me a story about making a medication for an elephant.

chartist profile image
chartist in reply topark_bear

Compounding pharmacists, to me, are generally impressive with the compounds they can put together, but it is unfortunate that more doctors do not take advantage of their services. They can be a real blessing to so many people out there with intractable pain who have not been able to get enough pain relief from their doctors. In the case of the topical compounds which they can make up, this often avoids many of the side effects of these drugs.

Art

LAJ12345 profile image
LAJ12345

I used a compounding pharmacy to dilute mirtazapine and put it into capsules so I could weigh it out to wean hubby off it as it was causing a lot of his apathy and fixed face. It was much more accurate that trying to cut the full strength tablet. They have to do minimum quantities though so a lot is going to waste now he only needs one capsule a week.

grower profile image
grower in reply toLAJ12345

I'm on Mirtazapine and just increased from 30 to 45 mg. Hovv much vvas your husband on. Has his "fixed face" improved since he cut back? I had that long before I started on the drug.

LAJ12345 profile image
LAJ12345 in reply togrower

His face is normal again! And his apathy isn’t as bad. His compounded capsule is 3.25 mg in 156 mg of powder and he now takes 10 mg of that so 3.25 x 10/156 mg! So little but I did try stopping at 20mg of this diluted powder and he suffered doing that so back to doing it slowly. It’s taken 2 years to get off.

chartist profile image
chartist

A little more information on the value of a good compounding pharmacy/pharmacist :

united-rx.com/benefits-of-a...

centralcompounding.com/arti...

Since various forms of pain that your doctor, neurologist or MDS may not be able to treat effectively are common in PwP it may be worthwhile to ask a compounding pharmacist if they have any options for your type of pain.

Art

Despe profile image
Despe

Hi Art!

We have two compounding pharmacists and I am so glad to have them. One is at my neighborhood (they filled intranasal glutathione prescribed by Dr. Mischley and LDN prescribed by our FP. The second one compounds a hormone replacement therapy for my husband, prescribed by our homeopathic doctor. I couldn't get either one compounding medicine at a drugstore. They are invaluable!

chartist profile image
chartist in reply toDespe

Despe, yes definitely, a good compounding pharmacist (CP) is invaluable! Even if there is not a CP close to where you may be, that should not be a problem as your doctor will send the script to them and they can just ship the compound to your door! Importantly, they can often make recommendations and if your doctor agrees with the CP, he can send the script to the CP for them to compound. very convenient and can often times all be done by phone!

Your experience highlights the value of a good CP and gives more of an idea of how they can help in a common situation where a specific dose of a common drug is not available at a regular pharmacy. Regular pharmacies do not do compounding, so having the option of a CP is useful for patients in general and can offer options and solutions that regular pharmacies can not.

The main thing is being aware of all that they can do so that you can take full advantage of their services. Often times the best way to find out if they can help you with any problem related to your meds or your health issue is just to call them and ask. They can usually answer your questions right away over the phone! Once you are aware of CPs and what they are capable of, their value becomes more apparent and you will have a better idea of when to call on them. I've even heard of people who have an idea of a combination of multiple ingredients for a particular use and then ask the CP if their idea is doable and whether it is likely going to be effective or not or whether there are better ingredients to use for the intended purpose.

In my friends case, her primary doctor as well as the specialist her primary sent her to, either were not aware of how a CP could have benefited her or didn't care enough to mention it. It was her call to the CP that got the ball rolling in her favor and to her benefit.

Art

rebtar profile image
rebtar

ART, could you ask which compounding pharmacy she's using? It would be a good resource to have on hand.

chartist profile image
chartist in reply torebtar

I don't know the name or exact location, only that it is in New Mexico.

Art

rebtar profile image
rebtar in reply tochartist

OK, thanks

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