What medication works for you? : I've already... - LUPUS UK

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What medication works for you?

Nickswich profile image

I've already exasperated one rheumatologist by reacting negatively to the meds she's prescribing! At my last session she just about gave up and asked me what I wanted to do, I DONT KNOW DOC, YOU TELL ME, lol 😂

Anyhoo, I seem ok on 30mg duloxetine, as long as I don't run out (MAJOR headaches...)

Hydroxychloroquine made me dizzy.

Prednisalone made me angry, agitated and impossible to live with! I couldn't get off those quick enough. Nightmare

I take a pile of vitamin D. When first tested the score was 7. I think vampires and moths score higher than that.

So what do you recommend for pain and moods?

Anyone found any good herbal stuff?

32 Replies

Hi nicks with

One of the meds I take is Amitriptyline as its a relaxant. You take it at night as it aids sleep. It also can help mood as it has anti- depressant qualities but is a good pain reliever. Your GP can prescribe it.

You have to be careful with herbal remedies with lupus because they can boost your immune system , not what you want with immune illnesses because they'll cause it to flare. x

AgedCrone profile image
AgedCrone in reply to misty14

I so agree with you Misty about herbal/natural remedies ...many moons ago I (I must have parked my brain ) I tried Echinacea....it seemed to cancel all the good my RA meds had achieved & I went back to pain & stiffness. Eventually my brain woke up & I stopped taking it & I returned to the lesser symptoms I'd had previously.I did tell my Rheumy...he just smiled benignly.......

I have never again attempted to self medicate....tempting as some remedies sound I reckon if my Rheumy doesn't agree..he kinda might know better than me!

misty14 profile image
misty14 in reply to AgedCrone

Hi aged crone

I learnt the hard way like you about herbal remedies, think it was the same one!. I also meant to say that you have to be careful with drug interactions if you take a combination of diferent types of medication!. Hope your as well as possible now. X

AgedCrone profile image
AgedCrone in reply to misty14

That is why using the same pharmacy is useful. I was prescribed an anti viral for shingles by a locum doctor & thank goodness by regular pharmacist spotted a problem.....& stopped any nasty effects from clashing meds.

So far I'm doing good on RTX...thanks.

Nickswich profile image
Nickswich in reply to misty14

Thanks Misty. I'll ask my dr about it.

I had no idea herbals could be so dangerous. I thought if they were natural then they were safer! Whew, I'm so glad I asked. I saved myself a trip to Holland & Barret.

misty14 profile image
misty14 in reply to Nickswich

Learnt this the hard way nicks witch. Good luck with your GP. x

Sorry to hear you are having such a bad time with medication, I really feel for you. Someone did say that there is an alternative hospital in London that does herbal medication (I can't for the life of me remember what it's called.) I asked my rheumatologist about it was advised against it as they won't have done as much research into Lupus and as medication is helping me. For you though it might be worth a try as medication isn't helping you.

I take methotrexate which suppresses the immune system, hydroxychloroquine, prednisone (which I'm cutting down to come off) amitriptyline and co-codamol 30/500.

Hello. Sorry to hear of your struggles with Lupus meds. I see you're on methotrexate. So you're already on an immune suppressant. Do you still get symptoms? Have you tried any other immune suppressants? Maybe that could be tried? I saw a doctor at the London Bridge Lupus Clinic in April. I was on MMF and Hydroxychloroquine. He has added Mepacrine into the mix. It's a similar drug to Hydroxychloroquine. Used for SLE and SCLE and DLE. It has helped me. It's unlicensed and I'd never heard of it before. Local doctors never mentioned it. I'll find a link for you. Also, he mentioned adding some methotrexate in, lowering the MMF. I'm in the max dose of MMF. So his treatment plan for me was much more personal and individual. Local drs said MMF or azathioprine. End of. Just 2 choices. I think his knowledge of lupus and the drugs give him that ability to mix your drugs to suit you. I suffer terrible headaches / migraine. But now my lupus drugs seem to be working the headaches seem less frequent and the sumatriptan now works when I do get them. Sumatriptan comes in 50mg & 100mg. The 50mg didn't work for me. The 100mg, along with paracetamol and ibuprofen seems to stop me getting to that rocking and crying in bed with pain stage of a headache! Well, so far. Fingers crossed. I hope I've helped. Best wishes.

soootired profile image
soootired in reply to Wendy39

I did some research on mepacrine having read your reply, and it sounds interesting. Are you still taking hydroxy as well?

Wendy39 profile image
Wendy39 in reply to soootired

Yes, I am taking hydroxy as well.

I'll get that link for you both and my original post. Not many people here are on it. I guess because it's unlicensed and you'd have to know your stuff to be confident enough to presribe it?!? Just my thoughts. It's an anti-inflammatory and not an immune supressant. Good for skin issues. Same family of drugs as hydroxy. Like I said, used for SLE, DLE and SCLE.

I take 2 x 200mg of Hydroxychloroquine a day. 3g of MMF. 50mg of mepacrine 3 times per week, Mondays, Wednesdays and Fridays. This is, I understand, the lowest dose. You can take higher doses and daily.

It is really helping my rash at the nape of my neck. Plus my other symptoms have lessened. My headaches are less frequent and less intense/overwhelming, which are a big part of my lupus and flares.

Because it is unlicensed and I'd been told to have it at a private appt, I had to then see my GP and persuade her to write the prescription. Luckily, as I had no NHS Rheumy appt coming up, she agreed. But she couldn't find it on her system. Not listed. As unlicensed. So I had to liaise with pharmcist herself. The 50mg capsules are over £700 a go, I think she told me! So I agreed to have the 100mg tablets, that were cheaper and I cut them in half myself.

After being told to take it by Dr K in London on 21st April, I didn't start tkaing them until 5th June. So now been on them 2 1/2 months, approx. I think they are helping me. But strictly no alcohol.

I'll post links now.

Wendy

Wendy39 profile image
Wendy39 in reply to soootired

Guys and St Thomas' Leaflet on Mepacrine.

guysandstthomas.nhs.uk/reso...

Wendy39 profile image
Wendy39 in reply to soootired

My post and a picture of the drug.

healthunlocked.com/lupusuk/....

soootired profile image
soootired in reply to Wendy39

Thank you. X

Wendy39 profile image
Wendy39 in reply to soootired

No problem. x

Paul_Howard profile image
Paul_HowardAdministrator

Hi Nickswich,

If you are unsatisfied with the treatment plan set out by your current rheumatologist, you may want to consider asking your GP to refer you to a different consultant for a second opinion? It may be best to see a rheumatologist with a specialist interest in lupus? If you let me know whereabouts you live, I can provide you with information about any lupus specialists we know near you.

We published a blog article about pain management in lupus which has some tips you may find helpful - lupusuk.org.uk/pain-managem...

Regarding herbal treatments; It is best to discuss any of these with your doctor before starting them. These can potentially have adverse effects in lupus or interact with other treatments. It is also important to bear in mind that what works for one person with lupus may not work for another or could be potentially harmful.

Catcon01 profile image
Catcon01 in reply to Paul_Howard

Hi Paul

Could you please provide me with information re rheumatologist who specialise in Lupus near me. I live near Warrington in Cheshire

Many thanks

Cath

Paul_Howard profile image
Paul_HowardAdministrator in reply to Catcon01

Hi Catcon01,

I believe your nearest specialists may be at The Kellgren Centre for Rheumatology in Manchester Royal Infirmary. This is a LUPUS UK Centre of Excellence. You can learn more at lupusuk.org.uk/centres-of-e...

Hi Paul, My dr is a chronic pain specialist and fantastic as far as being personable and passionate about my cause. I really feel like he's working hard for me, but I just think the meds he's recommending aren't working. I know it's a case of trying things and that does take time. Im seeing a specialist at Addenbrookes, and a rheumatologist at the local General.

I'm in west Suffolk, if you know of any lupus specialists that would be great - thanks!

Paul_Howard profile image
Paul_HowardAdministrator in reply to Nickswich

Hi Nickswich,

The rheumatology team at Addenbrooke's has a number of lupus specialists and a specialist lupus nurse.

I agree with all of the above regarding herbal medication but you could try alternative therapies. I had reflexology for some time which helped with some symptoms but was also very relaxing and help with the moods. You end up confiding many things to your therapist and to no one else which helps with the frustrations of having lupus. Among the many prescribed meds I take a cod liver oil capsule is the only other thing I take. Good luck.

Nickswich profile image
Nickswich in reply to IMWilson

Hi there IMW...

I've heard of others taking cod liver oil. Might be good. Thanks for the tip!

I take Hydroxychloroquine, Mycophenolate and a pinch of Amitriptylene. I also take Co codamol sometimes and a Zopiclone at night. I know sleeping pills are BAD but at my age I don't care so much as long as I can sleep.

Everything seems to do what it is meant to...up to a point. The Amitriptylene is for peripheral neuropathy but is a very low dose as any higher may meI sway about when on my feet.

Hi Bones, thanks for chiming in:-) some new ones in there for me to look up. I don't usually have trouble sleeping. With all my issues, I do manage to sleep like I'm dead, which is handy. We had violent thunder storms the other night, or so I'm told.

Oo swaying doesn't sound good. That's why I came off the hydroxychloroquin. Drove me batty!

I can't take any meds either and my doctors know this. The health system really needs to get to grips with the word 'health' - health doesn't come from pouring more toxic drugs into a sick body. I sat myself down one day or several days in fact and thought it all through and took myself off all my meds and started a 'health' strategy.

I learnt to muscle test myself to see what my body needed because our bodies have a higher inner intelligence and mine wondered what the h.... I was doing to it with all the conventional treatment - 'guinea pigging'.

I tested and still do test everything I put in my body and when to put it there. I am so much better now after blood tests showing so much wrong with me - anaemia, hypothyroidism, thrombocytosis, hormonal imbalance, a lack of good gut bacteria, a fungal infection, a bacterial infection and the list goes on to the point where I wondered how much longer I could live.

Gently does it for me and I use herbs which I muscle test in my local health shop. I eat organic whenever I can get it and local where possible if not.

We are all different, but healthy food has got to be best once you find out what is right for you.

I have to be careful with high protein, but I do need some. My kidneys can't take too much. I can't eat too many of the belladonna foods - but can take a little now and again. I can take no grains - Crohn's was another problem for me.

I was lucky to find good complementary health practitioners - homeopathic, herbal, kinesiologist, nutritionist and natural healer.

What we need is a good system of health with a wide variety of approaches to suit everyone, but also everyone has to help themselves; it is not a case of someone else healing us - it doesn't work like that, not for me, anyway.

Natur Leaf. (Without the "e" in Nature) It's a combo of plant sterols and sterolins. It seems to be as effective as Prednisone without the side effects. Everyone I know who has tried it (even those who would have normally taken Prednisone) says it works including me. When a flare starts I take 3 capsules 3x per day and it's starts getting things under control within a day or two. Some people take 2 capsules a day on a regular basis to keep their immune system more stable and the higher dose if they start going into a flare. The stuff is pretty impressive. I think you can buy it on Amazon among other places.

I'msickenandtired.... good name! And a bit briefer than imsickandtiredofbeingsickandtired :-)

Interesting! See, I don't get flare ups, I feel the same all the time, unless I do too much physical exercise. How are these flare ups? Are you ok inbetween?

Paul_Howard profile image
Paul_HowardAdministrator in reply to Nickswich

I would just like to advise you to discuss any complementary therapies such as 'Natur Leaf' with your doctor before trying them and not to stop other treatment unless you discuss it with them and are closely monitored. Some complementary therapies can cause adverse reactions in people with lupus and potentially interact with other treatments. It is important to bear in mind that what works for one person may not work for another or could be potentially harmful.

I'm only good when I go into remission, something I occasionally do, sometimes for months. But, otherwise, every day it's something. A flare, however, is pretty huge and, depending on what my immune system is attacking, can land me in the hospital. Flares usually involve a LOT of pain, sweating, sometimes fever, fatigue, malaise, and problems with whatever organ(s) is being attacked. For me that could be seizures, heart problems, lung problems, stomach problems, etc. I also have stage 2 kidney disease so there is that.

Wow, that's pretty severe. I'm sorry to hear about that. I can really see now how this affects everyone differently, God bless.

Yes Medical weed.. seriously helps me and I do not drink or smoke. It helps with inflammation and pain and helps me sleep .

Hydroxychloroquine makes me very dizzy they had me on 400 mg a day I cut it to one a day just at night . I'm slowly taking myself off this my hair falling out and the dizzy spells better on one a day at night.

I went all Alkaline diet and I have a Kangen water machine that alkalizes my water to 9.5. Completely cut out all suger caffeine gluten and I'm feeling back to normal as I can be . Next back to Pulattes to stretch my ligaments and tendons

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