1.) Seeing the neurologist today. I have my notes, list of meds, etc. Is there anything else I need to arm myself with - good questions to ask?
2.) I just replied to my previous post - but I was tapering again and symptoms came back up - so now I’m holding steady at 40mg pred but considering upping it to 50mg due to eye pain. No tapering in the near future just trying to find balance. Besides calcium and Vit K - what else should I be supplementing? I’m also worried about cataracts - how long does that take to happen. The eye doctor says that the pred pulls moisture into the eye and that’s why it gets cloudy? What can I do to fight all the side effects? Plus I still have tingly feet and slight swelling in the ankles.
3.) I have a vacation coming up - leaving Sunday on a plane - I’m super stressed about my health - HBP, GCA and general anxiety. Also terrified of DVT’s. Any tips or tricks that you can share? I read about lots of travel on here so I’m sure you will have helpful advice!! Compression socks!?!? 😋
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Cataracts - varies depends on dose and individual. If it’s Pred induced not a lot you can do except protects eyes as much as possible with good quality sunglasses.
Some people suffer with cramps so Magnesium is good. VitD&Calcium supplement is usually prescribed in UK - but VitK2 is recommended.
Flights - request airport assistance either from flight operator prior to flight or from airport when you get there. You may think you don’t need it, but it makes life a lot easier all round. Let others take the strain! Make sure you have all medication in your hand luggage and take extra in case it’s needed. Make sure Tavel insurance company are aware of GCA/PMR - usually not a problem. Definitely wear compression socks even if it’s relatively short haul.
Plenty of sunscreen, sunhat, sunglasses and not too long in the sun! Build in relaxation time.
I've been on pred for nearly 10 years - I have absolutely NO sign of cataracts - much to my disgust! Yes, I know I'm crackers, we all know that, but cataracts would mean getting rid of at least one pair of specs! After 60 years that would be a wonderful gift! And no, I can't do contacts now. jinasc on here had tiny cataracts at diagnosis with GCA 13 years ago - her optician immediately told her to get reactolite specs (transition lenses). If you wear glasses do that or make sure you always wear sunspecs outside as I do and the likelihood of cataracts is greatly reduced. As far as I know, jinasc still has no sign of cataracts that need attention. They are more likley with pred yes, but not inevitable. But GCA is a far greater risk to your sight than cataracts, they are 100% reversible, GCA blindness isn't.
Is it long haul? Take all the usual precautions - wriggling toes, do the exercises, drink all the water and some more. Is it a big airport? Request airport assistance - at least you get to the other end feeling human! It reduces the stress factor of "can I make it to the gate?", "where now" - let them take the strain. You can book it in advance or most airports allow you to do it at the checkin desk. Don't believe a young healthy member of staff who says "it isn't far". Above all, it gets you through security and immigration in a very civilised way and saves a LOT of standing in line.
Compression stockings? Probably a very good idea, there is a bit of dispute about their value but it is another help. Is your flight early and are you far away from the airport? Get there the night before so you start fresh, straight from B&B, without the worry of getting to the airport in plenty of time. It is worth every penny.
Pack at least double the amount of pred you will need and keep it in your handluggage - don't risk it in checked luggage, maybe give half to a travelling companion. Have a list of medications and possibly a script to prove you need them, I put mine in the same sort of plastic bag as liquids and chuck it in the same tray at security. In some countries it is required, some not. Check your insurance covers you for all eventualities - not because you will need it but because it is important,
While away consider hard before doing things: Could/would I be able to manage this at home? If you have any doubts - don't risk being stranded somewhere. Don't get dehydrated, don't lie out in the sun or walk in the sun without having loads of water with you. Relax - you are on holiday! You have a serious systemic illness and are on a high dose of pred. It has effects you aren't yet used to and will likely make you more sensitive to heat and definitely to sun - high factor sunscreen is advisable and look for the shade. But there is no real reason to say don;t go as long as you are sensible.
If you do feel ill, don't spend a few hours repeatedly asking for advice on the forum!! Get immediate advice from the hotel or tour operator about local medical assistance. It might save you ending up in the ED being investigated. This isn't to scare you or make you paranoid - but it happened a week or so ago.
I'm sure I've forgotten something. Just stop worrying and have a good time.
Thanks for all the info - it’s exactly what I needed!!!! We are going to Hawaii. We are going to Los Angeles the day before and staying the night - hotel shuttle in the morning - flight at 9am - 5 1/2 hours. I was planning on carrying all meds. My family is making fun of me with the compression socks - but if it eases MY mind- the I’m going to do it. Have cut out all caffeine and alcohol - so only water. Just scared about blood clots and my blood pressure. My doctor gave me 2 tabs of Valium (just like for MRI) so I might take half to keep my anxiety down. Since it’s a US state - I think my medical will be fine but I will call today and google local hospitals or clinics. Already have hats, sunscreen and sunglasses. I’m not the type to spend hours on the beach - would rather do some sightseeing! I’m planning on pacing myself so I hope all goes well!! Thank you!
Ps - what about plane germs, catching something? Tips! Masks? 😷
I never bother, I have never caught anything yet, OH tends to and THEN hands them on to me. Or our cousin catches something coming here to ski - and gives it to us!
There are experts who say ALWAYS compression socks - even for a short (2 hour) flight. 5+ is long in comparison.
There is a thread somewhere from Soraya - I see Poops has already found it.
My husband started wearing glasses at 9 years old. This year he had cataracts and was operated on one then the other four weeks later. He is now 84 and only needs reading glasses - his long sight is amazing!!!
I've been extremely long sighted and worn glasses since I was 4 years old... I had both cataracts operated on 4 years ago and ended up moderately short sighted!!!! Consultant was baffled... I was and still am very pleased! No more magnifying lenses.... I can read without specs but more comfortable with ... I've reached a conclusion the human body is sometimes a mystery and also remarkable.. 🌻
I am against over supplementing, the main advantage it has is filling up the supplement suppliers coffers. They reckon in the US that nearly ninety per cent of supplements are not needed. I think if they are recommended by a doctor that is different. A good diet, exercise and a good night’s sleep are the most important things to aim for.
"The biggest danger of DVT is that a clot will break free and lodge in one of the pulmonary arteries supplying blood to the lungs. This potentially fatal condition is called pulmonary embolism. Symptoms include rapid breathing, pain when breathing, shortness of breath, chest pain that travels up to the shoulder, fever, and fainting. It is a medical emergency. Air travelers can do several things to reduce their risk:
-If you're not at risk for bleeding and can tolerate aspirin, take a baby aspirin (81 milligrams) one-half hour before takeoff.
-Wear loose clothing and comfortable shoes.
-Avoid crossing your legs while seated.
-Get up from your seat and walk up and down the aisle at least once an hour. If you're pregnant, request an aisle seat so that you can get up easily.
-Drink at least 8 ounces of water every hour or two and avoid alcohol, caffeinated beverages, and salty foods.
-Keep the space under the seat in front of you empty so you can exercise your feet and ankles occasionally.
-If you have any risk factors for deep-vein blood clots, consult your clinician. She or he may suggest support socks or stockings."
Ophthalmic manifestations of giant cell arteritis...........................excerpt:
"Rheumatology key messages
-All acute ophthalmic manifestations of GCA are emergencies, given the risk of permanent visual loss.
-The importance of premonitory symptoms in GCA, including transient monocular vision loss, visual hallucinations and diplopia, is frequently unrecognized.
-High-dose glucocorticoids are the mainstay of initial treatment of GCA patients with visual symptoms."
Brilliant advice here. Just adding my recent experience.
Carry all your meds Inc creams and liquids in your hand luggage with a print out of your prescription. If you use assistance, which I did, tell them which bag has your meds and show them your prescription. It makes them aware that you will get pulled up through security and they will help to deal with it. My creams were tested (Zeroveen and Hirudoid) as was my Gaviscon All went through perfectly fine.
Yes do wear compression socks. There may be some exercises in the on board magazine but basically the idea is to keep the muscles working in your lower legs to help venous return. So pumping your foot up and down, ankle circles, simulated walking etc. Get up and walk about if you can get round the trolleys
I have always burnt in the sun. So the lowest factor I use is 35. However since I have had pmr and been on steroids I have used factor 50. Recently we were in France and even though it was overcast I still used it. It's all about the uv light so still need it even if it's not bright.
I have worn Reactolite lenses for 40 years. It's only recently that my optician said to me that they help to prevent cataracts. If you don't have them then get yourself some good sunglasses.
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All went through perfectly fine.
Psoriasis saga continues
More aches & pains!
A couple of questions please
Blurry Eyes
