Hydroxichloroquine

[wsmith]

I was diagnosed with arthritis 3 years ago and the specialist gave me hydroxichloroquine to take but after reading about it I battled on without it as I was not keen to be on any drugs unless it's absolutely necessary. I'm coeliac (confirmed 26 years ago) and have just been diagnosed with sjogrens due to saliva glands not working well. Has hydroxichloroquine helped and has anyone else tried alternative meds/vitamins/minerals etc? Coming to the conclusion I am going to have to submit to taking it..hopefully it will help. Keen for any input/experiences.

[weathervane]

Hi wsmith

I was started on this drug a year ago for sjogrens ( i also have joint and muscle pain) . It made a difference to some of the pain so it was a start. I have had a rituximab infusion 3 mths ago which has reduced the swelling in lymph nodes, helped tiredness and some of pain , though still taking lyrica. I still have somebad flares BUT i can cope better now. I hate taking all the drugs but i was a bit of a mess without them. I hope at some stage i will be able to reduce certain ones . I had no bad reactions to the plaquenil or lyrica so i was lucky. I have not tried supplement as some of the drugs info warn about taking things without doc advice but i will be asking rheumatolgist at next app. Good luck with all i hope things work for you 😀😀

[wsmith in reply to weathervane]

Thank you for replying. It's not a great road we're on but reading through some peoples plights there are many people worse than myself. I do hope you have some luck improving. I think I'll go back to the specialist and have another talk with them. Best of luck to you.

[bambino4]

Hello....Yes I have had Sjogrens for about 5years, was fully confirmed I definitely had it about a year ago and started hydroxichloroquine as my Rhemy advised me it would hopefully help with my symptons.....and although I still have all the symptons, I would definitely say my energy levels and wellbeing in general has improved since taking this drug, although it did take about 6months on them before I felt any better. I did experience a lot of symptons when I first started though so just expect the sickness and diarrohea etc that I think is a common thing with this drug.

Good luck

[wsmith in reply to bambino4]

Oh that doesn't sound like fun. Thank you for sharing your info with me. Has it helped with the arthritic pain?

[Tassa]

Hydrox is used to help the immune system but like all chemical medications can affect your eyes after a prolonged use. you need to have an eye check at least every six months or a year. it does help to control the immune system so just be aware of that problem that could arise.

Traveller.

[Spice]

Hi I have had ss for many years now and have gone down the alternative path for a long time now. I have shared often about the help the Mannatec products of Ambrotose and Plus have given me as they support the health of the cells. It is a phytonutrient. You have to take it for a long time for the normal regeneration of cells to benefit and in turn help your body function better. I also am an advocate of the need to supplement with a good quality vitamin and mineral intake as our ss bodies use up every little bit of nutrients from our food and we end up very deficient. The chewing of gum or sugarless candy also helps keep the saliva glands working. You can also milk your glands by massaging them around your throat area. Its a use it or loose it idea. I have found that when I moisturize my face I do my eyelids as well and that seems to produce a thicker tear film. Holding a warm flannel to shut eyelids can help loosen this up as well. Heating a toothbrush under a hot tap and using the OraMed product to clean my teeth provides a moister mouth longer. The product is a mixture of almond, spearmint and peppermint oil. One drop on the toothpaste is enough for me. It is strong and doesn't taste too wonderful but leaves a fresh and moisturised mouth. An elderly Dr once told me to remember that SS people need to keep themselves moisturised on the outside and the inside. For the inside he recommended coconut oil. It helps keep the bowel going. One has to experiment as to how much suits the individual. Hope some of this helps. I go online and my Mannatec comes from Australia and the OraMed from America. Good luck

[wsmith in reply to Spice]

Oh wow...thank you so much for the very useful information. I will go and see if I can get those items sent to NZ. Will start to look at moisturising on the inside Have been hopeless at water intake up until a few weeks ago but have been consuming a fair amount and that also seems to help too. Thank you very much for sharing that knowledge. ☺🙌

[Spice in reply to wsmith]

Hi Its me again. Realised when I re read my last post that I had said to put the OraMed on the toothpaste. I meant on the toothbrush. You don't need to use toothpaste. I have my own teeth still. I also am in New Zealand and would be happy for you to ring if you want to. I am at 06 7582681 or if you prefer you can ring Australia on 0800 333 250 and ask for more information. Like everything it is pricey but for the benefit of better quality of life I go without other things. I get no where near the fatigue that I used to as well. If you go online for the OraMed the company is very good with service and information.

[wsmith in reply to Spice]

Hi there, I did think you meant that I am finding toothpaste a bit aggravating. What would be a good time to ring you? If you did have a few minutes to talk to me I would be keen to ring, as I am so new to this whole thing it would be great to talk to someone.

[Spice in reply to wsmith]

Hi It is school holidays and I am going away for a few days to Taupo. Try in a weeks time. Just take pot luck. My husband will be here. Sorry I am disappearing right now but it will be lovely to chat to you. There is a lot that we ss people have that is the same and a lot that is different. A mine field for us and for the Doctors. However brainstorming amongst each other is so supportive and also gives us things to try to make ourselves more comfortable.

[wsmith in reply to Spice]

Hi again, I too am heading away next Monday for a couple of months so may not catch you sadly. Could you text an email to contact you on perhaps? You could text it to my cell phone which is 021 866 491. I did write a response but managed to wipe the whole thing but long story short... I had looked into the Phytonutrients and wild yam 3 years ago but wasn't sure they worked. I will definitely try these now that someone else is having some joy with them. Will have to wean myself off the bone and joint perhaps as they sound like they will do the same thing. Many thanks again.

[Janetkay923 in reply to Spice]

Good morning, I just found this site and joined. Grateful to see your post. I too am going the natural way as much as possible but have been on hydroxyqloroquine for over 3 years with regular eye checks. I know it builds up so want to stop using but wasn't sure what to replace. On a multivitamin and coconut oil so excited to hear about Mannatec product. Thank you!!!

[wsmith in reply to Spice]

Hi again, I didn't get a chance to organise getting the Mannetec products before I left I was running around like a heaskess chook...but will get onto that when I get back. Sadly also left the notes behind too in my disorganised state. Could you give me the name of the eyes drops you use. It has progressed to my eyes in the last few days Thanks for all your help xo

[Spice in reply to wsmith]

Hi Wendy PolyTears an Alcon product is what I use. It does have preservative in it and I know that a lot of SS people are not keen on that but I have been using it for years with no ill effects. There are other eye drops on the market and sometimes you have to experiment to find out what ones suit you. Good luck. Enjoy you trip and all the adventures it provides..