Memory issue

[NBtired]

I've been feeling a bit out if it this week, aches, pains and fatigue - also my memory has been really bad, affecting my work. Can anyone recommend something to help memory?

[Manofmendip]

You need to discuss this with your GP we cannot give you medical advice, as we are not medical professionals.

Who manages your APS, what medications are you on and where are you from?

Dave

[MaryF Administrator]

Hi, you need to check in with your Rheumatolgist or whoever is managing your Hughes Syndrome/APS. Maybe something can be fine tuned, but that advice needs to come from them. Some members on here successfully use their appointments to bring about some changes at times including their INR targets and also perhaps adding in Plaquenil or other medications, but these are from other people's personal appointments and the advice given at them. If you are due a review make notes and go along armed to the teeth with all your information. If you are not due, one

perhaps politely and firmly ask for yours to be brought forward, take a cancellation slot, these do come up at times with persisting phone calls! Also plenty more available on the charity website. Also if nobody is managing your condition, there is a list of APS specialists up on this forum and also again the charity website.

MaryF

[NBtired]

I am only on hydroxychloriquine - due to have review in July so will ask then. Thank you

[Manofmendip in reply to NBtired]

Are you not on any anti-platelet medications or anticoagulants? These may help your memory issues, please discuss these options with your consultant.

Dave

[Lure2]

Hi, Memory loss use to come when we are not well anticoagulated. Also stress and not enought sleep make your memory fail. I use crossword (that is for longtime work).

Good luck and I agree with the above said. Take care

Best wishes from Kerstin in Stockholm

[Salty]

Hi Nbarnes, as already mentioned,,a number of things can affect memory, but memory loss is one of the major neurological manifestations so APS. Thankfully, the proper combination of anti platelet agents and/or anticoagulants can result in amazing improvement in this problem. Some need only aspirin, others need both an anticoagulant (warfarin--often to a higher INR than for other conditions--or heparin) and an anti platelet agent. You will need someone very knowledgeable about APS to help you with this. It is trial and error to determine the right treatment for you. You will know the treatment is right when your symptoms resolve.

[Kate_clot]

Hi, brain fog and memory issues are also a problem I'm trying to deal with. I have all my doctors working to adjust my meds till something works. I had a huge improvement when starting heparin a few months ago as Aspirin alone wasn't doing the trick. I'm starting warfarin this week.

The only tips I can suggest is writing everything down. I carry a note pad and my phone at all times. I set alarms to prompt me not to forget important things, use post it notes everywhere. Often put my keys with my lunch so I can't drive to work without it. Being super organised also helps eg packing car the day before, writing things on a calendar and telling my partner the really important things. Telling people I'm having a bad memory day, so they might understand if I ask something over and over. I'm also trying to reduce stress as this impacts on my brain fog a lot. It can be so frustrating so keeping a sense of humour is vital. Hope you feel better soon.

Kate

Sydney

[Lure2 in reply to Kate_clot]

Hi Kate, Good luck when starting warfarin. Make notes and visit the coagulating clinic often.

Kerstin

[Manofmendip in reply to Kate_clot]

Good luck starting Warfarin Kate.

Dave

[Kate_clot]

Thanks Kerstin and Dave. I like heparin (Celexane) no fuss, but Drs worried about osteoarthritis. As my calcium levels are dropping fast and I'm getting joint pain, happy to see if warfarin helps. Only concerns are diet and blood tests and seeing what INR I need to alleviate my symptoms. Anyway will let you know how I get on.

[AnnNY]

APS is being considered for me and I'm hoping for a heperin trial as soon as I can get it. I asked for low dose naltrexone that I thought would help with pain, but it helped more with my intense brain fog. Then I asked my neurologist about APS because I have MS like symptoms but no MS (also presumed lupus). He said take an aspirin. I think he was giving me the bums rush, but I started taking Aspirin and it has made a difference. I take it twice a day, since it also helps with a frequent headache that I thought was from my sinuses (better than Advil or Tylenol #3. My rheumy long ago had told me to take an aspirin for migraine prevention. Since it's over the counter, you might give it a try and see if it helps. It didn't take much more than a week for me to see the difference--unless there is some reason you shouldn't take aspirin. I'm not a doctor either, but this has been my experience.

[Lure2 in reply to AnnNY]

I wrote an answer to Nbarnes question that was ment for you.Hope you read it. Kerstin

[Lure2]

Hi, In Sweden we have Trombyl but we can not get without receipt from a doctor. I have understood it is the same as Apirin as it prevents some clotting tendences with APS. I started with 75 mg to prevent Auras and they were gone with Trombyl. Then I got worse and they tried with 160 mg (double dosis) That made no change to the better. At last i tried warfarin and a "miracle" happened. I could see.

First of all I do think you must get a "fight" to find an APS-doctor. You have a neurologist and we have found that they do not always understand APS. Rheumatologists and Hematologists are better.And they must know APS!!!

Take it easy with the Aspirin because i had pain in my stomach when i was at double doisis.And it had not more effect to the neurological symtoms I had at that time. I needed an anticoagulation drug that made med feel better.

Good luck in Spain from Kerstin in Stockholm