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Old 09-05-2013, 04:07 PM #1
abbyrition abbyrition is offline
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abbyrition abbyrition is offline
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Default I need help with timing on meds and side effects please..

I've been diagnosed with Lupus (SLE) and Sjogren's Syndrome as secondary, as well as being treated for possible diverticulitis.
I now have between 7 to 20 medicines and vitamins I'm told to take daily. I'm having a particularly hard time scheduling all of them according to food intake, and what I can take with other pills, and what needs to be by itself. And on top of all that I'm having difficulty with some the side effects. So please, any help and advice wanted.

Vitamin B-12 timed release from Nature Made (I bought it before I read the vitamin forum and all the good info Mrs. D has listed on the right kind of vitamin B to take.) I haven't purchased the right kind yet, so I'm still taking this, because while it may not be as helpful, I figure it can't hurt... (I've been taking this with the Phentermine on an empty stomach first thing in the morning) Low levels per bloodwork per Neurologist
Vitamin D3 5000 iu from Nature Made one a day. With lunch meal. Deficiency per bloodwork per Neurologist
Vitamin C 60mg VitaMelts from Nature Made one with each meal to help with iron absorbtion. Per hematoligist for anemia.
Phentermine 37.5mg once a day for fatigue and to manage steriod side effects. No side effects from this med. take on empty stomach, first thing in the morning. i usually take the vitamin B12 at the same time. Per rhuematologist.
Doxycycline Hyclate 100mg 1capsule 2x a day for diverticulitis per rhuematologist. This med says take on empty stomach, but has caused weakness and vomiting within an hour of taking it. The pamphlet says it can be taken with food but may make the medicine less effective. Since this is the only way to keep it down, I have been taking it with food usually with breakfast and dinner. (however it has been skipped on my day after the methotrexate day, because I can't fight both at once).
Methylprednisolone 4mg take 3 pills in the morning, it keeps me up if I take them later in the day, causing insomnia. I also take these with food. This is to help with inflammation pain in hands particularly. It works mildly. Hands are functional, but not without pain still, and some days are worse than others. Tried larger do, but no change in effectiveness, so went back to low dose for less risk and at least functionability, per rhumatologist.
Methotrexate 2.5mg 5 pills on Wednesday night on full stomach after dinner. Today is my 4th dose, and medicine has not kicked in yet, and side effects are still bad, and have not waned. I feel fine on Wednesday night, and usually Thursday morning. By lunch time I feel exhausted and weak, like I have the flu. I get hot flashes, and dizziness. I sleep a lot on the day after, the fatigue is bad even taking the phentermine doesn't help. If I'm not sleeping, I don't move much. Letting the dog out to do his business wears me out. I have negative spoons this day. Per rhuematologist to treat autoimmune. (tried plaquinil first, but had allergic reaction, so can not take it ever again, so we moved to this).
Folic acid .4mg 10 pills on Thursdays to counteract the methotrexate. No side effects from folic acid. Per rhuematologist.
Leucovorin Calcium 5mg 2 pills every 6 hours after taking methotrexate to help fight the side effects on Thursdays. Per rhumatologist. This wass recenently prescribed, but doesn't seem very helpful in fighting side effects. I seem to be more alert, but still not physically active.that just means I stay awake through the side effects of the methotrexate. Per rhuematologist.

So my schedule for pills is:
Wake up take B12 & Phentermine.
Wait an hour.
eat breakfast - take Doxycycline
Wait an hour.
Eat something - take methylprednisolone and vitamin D.
Several hours go by.
Eat supper - take doxycycline
(Exception:
Wednesdays - skip evening doxycycline and take methotrexate.
Thursdays - add in Leucovorin Calcium every 6 hours, and add folic acid 10 pills with lunch. On Thursdays I also skip morning dose of doxycycline, and possibly skip evening does as well if I don't feel well from the methotrexate.)

Is there a better way to do this? Am I taking these in an okay order for effectiveness? Are there other things I can do to lessen the downtime from the methotrexate, and feel better? As it stands I can't plan anything on Thursdays, and even Fridays.
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Old 09-06-2013, 01:00 AM #2
Sylmeister Sylmeister is offline
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Default Hi Abby

I can not help you with timing, details or anything like that but I do have one suggestion that helps me manage all the meds I take. I have organized my meds into 5 groups or 5 times of day that I take them. I keep two of those weekly pill compartments. One I keep by the bed and one in my kitchen. In the keeper by the bed I put everything I need to take immediately, among them my thyroid pill, because it needs to be taken first thing in the AM, approximately an hour before I inject any proteins. I also keep in that container by the bed the meds I need to take at bed time. When I organize for the week, I take those bedside bedtime pills first for that first night. That way, when I wake up in the AM, whether I immediately get out of bed or not, I have the meds I need to take immediately sitting in the compartment for that morning and nothing else. To explain a little better I put the pills together for the week on Wednesday night. At that time I take the Wednesday night meds out from the Thursday pocket, which leaves the Thursday AM pills in the Thursday pocket. So I can literally take those pills without even turning on the light, because I took the evening bedtime pills out the night prior, with the light on.

Then the rest of my meds I spread across three times during the day and keep them all together in a large day organizer, one for each day of the week. When I get into the kitchen and start fixing something to drink, I take out the pills for the day, separate out the first round and put the mid day and after dinner meds back in.

If you have to space things out into say 5 events or more, keeping a pill organizer by the bed for those first and last to take might help you out. I certainly understand this being a concern, It's maddening to me when I miss a pill or lose track of time and take something late. Being sick is like having a full time job some days and we shouldn't have to feel that way.
Best of luck, Sylvai
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abbyrition (09-06-2013)
Old 09-06-2013, 07:13 AM #3
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Default


Boy, I thought I was organized with my 4 slots/day organizer, but you've got it down to a science. Keeping that 5th organizer by your bedside is brilliant.

Necessity is the the mother of invention and organization.

Abby, I realize your question may be more about scheduling/timing, nevetheless you should be able to find a combination of these that will help once you work it out.

pill organizers

Doc
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abbyrition (09-06-2013)
Old 09-06-2013, 07:21 AM #4
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Lightbulb

Leucovorin is a form of folate. Folic acid is duplicating that.

So I don't think you need the folic acid.... it is not active you know, and Leuocovorin is partially active. The two may interact at the blood brain barrier and that new papers suggest not using folic acid when active folate is available (Leucovorin and/or methylfolate).

Leucovorin:
http://en.wikipedia.org/wiki/Folinic_acid

Your schedule looks ok to me so far.... otherwise.

So discuss with your doctor dropping the folic acid. (or using methylfolate instead).
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abbyrition (09-06-2013)
Old 09-06-2013, 09:16 AM #5
abbyrition abbyrition is offline
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Default Thank you for all the responses & support!

Mrs.D - you're back from vacation! Thank you for weighing in! Your reassurance provides me confidence!

Sylmeister - thank you for the tips. I picked up my first organizer in the first month starting many of the pills. I have the one where it has each day of the week, and each day has 4 different places. Mine also allows you to remove the day individually so you could take it with you a bit easier. (already lost one... Stupid brain fog.) but I have been starting to keep a little pill box by the bed for my morning pills, as there have been some days the fatigue has me in it's clutches before I can get to the kitchen to get the anti-fatigue pills. (my immagination pictures that much like the old 70's Batman cartoon.) When I go out and replace my missing day from my current pill organizer I will get something more structured for my morning pills to leave by my bed. Thank you for the suggestion!

Doc - I have the same one you do! (Now minus the lost Wednesday slot) so for the temporary, I've just been refilling it every 6 days (as I only have the 6 days slots), lol. Oh goodness I'm a mess thanks for the links and support!
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