Dilemma

[Libertylane]

Primary care doc gave me 60 Pred because of my complaints. Have not been officially diagnosed,if that is at all possible because some things don’t show up in blood work and biopsy etc, so I see a rheumatologist on Thursday and trying to decide to hold off on meds till then. I have times where I feel like I have no symptoms. Don’t want more prednisone to mess up esr and cpa. I had back cortisone shots two weeks ago that might have lowered those values for false better results. Esr went from 10 in March to 30 now. CPA from .9 in March to 6.4 now Were testing for rheumatoid arthritis in March.

[PMRpro Ambassador]

"I have times where I feel like I have no symptoms"

What symptoms DO you have? There is obviously inflammation so you can't say it isn't showing in the blood tests.

[Blearyeyed]

If you include more if your History so far up to the point that you are being potentially treated for GCA now it will help us to help or reassure you more.

You other Health conditions and medications , and knowing which things you have already been tested for and had ruled out would help us not to suggest other options that are no longer relevant for you.

If you could describe your symptoms in full within the replies on this post that will also help us give a more informed opinion to help you in your choices.

Personally though , if it was me in your position , just as I was when first being diagnosed with GCA , l would take the initial precautionary treatment advice and start the Prednisone at 60 mg today before the Rheumatologist on Thursday. Your GP has obviously taken a decision based on your current symptoms , even if you are not suffering those at the same level all through the day.

Your GP has already taken blood tests and so your Rheumy will be able to access those results so new blood tests may not be required and any reduction in the numbers will actually be used as proof that the steroids are working and help with your diagnosis ( or you can take a copy of all your most recent blood tests with you to show them by requesting a print out from your GP records) .

If the Rheumatologist then decides that you may not have GCA or wants to try other treatment or doses , the amount of days you have been on Steroids at that level will not affect what comes next. You will have only been on high dose steroid for three days so it will be easy to rapidly reduce down off that dose over a matter of a fortnight and they will inform you how to do this and when to tell them if your symptoms begin to return. You will not end up with Steroid Dependency after taking it for three days , no matter how high the initial doses may be.

Not taking it now because of concerns about taking this medication may actually be more damaging for you. Sometimes waiting and double checking everything until your mind is totally at ease isn't always the best option. If you have suspected GCA , which could very quickly affect your sight if not treated as soon as possible , then you are living through one of those times when fast , decisive , and precautionary Medicine is far better for you.

It is your choice , and I know from your recent posts that the thought of taking high dose steroids is causing you a lot of worry. It did for us all , but protecting your sight and arteries is what you are trying to do right now before a Specialist finally makes a full diagnosis , and that is very important.

From the experiences of forum members with GCA whose stories I have read whose eyesight was lost permenantly , in some cases overnight , I know I was lucky to get this precautionary help , and I believe it would be of help for you to take the Steroid dose you have been prescribed over the next few days too.

Better and Easier to try the treatment and then if it isn't required , or doesn't work for you, or you can't cope with the side effects , to stop it , than not take it and suffer the real consequences of your Health deteriorating further because of the delay in treatment.

[GOOD_GRIEF]

I don't mean to be rude, but the level of pred dosage you describe here is usually used for GCA, and holding off on treatment could endanger your sight.

Wanting a better outcome on blood tests is hardly a good reason.

[Yellowbluebell in reply to GOOD_GRIEF]

I agree. I definitely would not be risking my sight over a few doses of pred. The few doses till thursday is hardly worth worrying about in my opinion. Each perso has their own opinion on pred but mine is that its my best friend. YBB

[DorsetLady PMRGCAuk volunteer]

hi,

To date you have posted 5 times within the last day or so, and despite having been given plenty of good advice you have not responded to any questions we may have asked.

I appreciate that if you are a genuine patient you are worried, but we do need a bit of feedback if only to ascertain that you are taking on board what we are saying.

As others have said, if you really have GCA then you need to take the medication.

[Libertylane in reply to DorsetLady]

Not totally sure of having since no biopsy. My eye doctor thought it should be checked out because of eye pain and some temple tenderness. Optic nerves good. Spine steroid shots grew my cataracts. Primary care doctor gave Pred after I kind of encouraged it and he gave 60 because I said that is what seemed to be standard. ER doc said last week I don’t have it b cause my esr was 30 and Crp 6.4(which is slightly elevated) I was 10 esr and .9 crp in March when tested for rheumatoid arthritis. I thought numbers should be lower than 30 and 6.4 since the spine cortisone shots. I also have severe spinal stenosis which I guess could alter numbers. Fusion surgery on hold until I get a handle on this. Same for cataracts surgery. See rheumatologist day after tomorrow and that is why I was waiting to take Pred after better exam. And that is pretty much my story

[Libertylane in reply to Libertylane]

I also take high blood pressure meds cholesterol drugs levothyroxine for hashimoto thyroid disease. I get heart palpitations with anxiety. That’s about it

[DorsetLady PMRGCAuk volunteer in reply to Libertylane]

Symptoms are the key - first and foremost. A biopsy doesn’t always prove you have GCA - the sample taken may not be affected, but that doesn’t mean other arteries are okay.

As for blood markers, up to 20% of patients never have raised numbers.

Please let us know the outcome of tomorrow’s appointment- and good luck. You certainly need some answers.

[Blearyeyed]

You definitely seem to have more going on than we first knew , as you feel that your cataracts were increased by steroids used for your other issues , and you have Hashimotos it does seem that the GP feels there is good cause to give you high dose steroids at the moment.

As steroids can sometimes affect some other conditions the choice to put you on the 60 mg will not have been taken lightly and must have been based with the symptoms you have presented with.

You may feel that you might have influenced their decision but I don't know many Doctors whom would take the view of the Patients on their own new set of symptoms so seriously to give the Treatment you have been offered without actually considering that the Diagnosis for GCA was strong . Most of us struggle to get our Doctors to agree with our opinion even when it's obvious that we are right.

Your Rheumatologist will take you off the 60 mg carefully if they feel the diagnosis should differ ,,and it is being blurred by your other Health issues. This would also take into account ensuring that you don't get rebound symptoms of Hashimotos or for your cataracts and stenosis too. You need to do what you feel you have to do , just be aware that if it is GCA you do not always feel Eye Pain at all or have Vision Disturbance for a long time before the damage is done , this is why Doctors will take this precaution with the medication until the diagnosis is firmly set in stone .

[Libertylane in reply to Blearyeyed]

Ok starting my 60 mg tomorrow. What can I expect after my first dose? Does it take a few doses for side effects to show up? As you can see I am a very anxious person. Thanks all for all the message help

[Blearyeyed in reply to Libertylane]

It really does depend on the individual when side effects occur , or if they happen at all.

Some people can have them straight away at higher doses , so it's always a good idea to give yourself some Days off , plenty of rest when you need to , sleep when you need to and take things a little slower . You may feel a little woozy , a little lightheaded , you might have an increase in your palpitations or find that you have some mild temperature of flushing. Some people find it more difficult to sleep at high doses , others can find they have more Fatigue .

Positives are that within a week or so as you body becomes accustomed to the drug you have the benefit of getting rid of the Pain. Some people can have this change in Pain and stiffness virtually immediately . You just need to remember that the Pred is not a " cure" for PMR or GCA but a Pain Control Drug. This means that even if you feel great or better on the steroids you still need to add a balance of rest and activity through your day and make some amendments to your Daily Routine as trying to do too much can bring back the Pain and cause you to need to stay at a high dose for longer , or cause you to need to increase your dose if you have already started to Taper.

You also need to take Vitamin D and Calcium at a different time of Day to your Pred as standard , if the GP hasn't prescribed these yet you should request it if you are kept on steroids.

We also recommend that you take Magnesium and Vitamin K2 , or at least a full multivitamin and mineral supplement and Omega 3 ( not 6) as this can help reduce the side effects from PMR , GCA and other Chronic Conditions.

Make sure you take your Pred with probiotic yoghurt and a little honey as this can protect your stomach , people often don't need stomach protection meds by using this routine.

Drink plenty of fluids , 2 litres a day , as the inflammation and taking various drugs can make you dehydrated internally , good hydration helps you cope with the illness and chemicals in medications. If you suffer with palpitations or dizziness anyway from your current health issues , sipping cool water through these symptoms does get them under control , as does sitting comfortably and doing deep breathing , and making sure you don't move to quickly from a position that you have been in for some time.

Try some gentle stretching and rotation exercises each day to help relieve any stiffness.

If you get a headache , this could be a side effect of getting used to new medication , not just the GCA , so it's worth seeing if it improves with a standard dose of Paracetamol through the day.

Many people also benefit from having a lower carbohydrate diet avoiding the " White Carbs" and no processed sugar or additives . Having Nutrient loaded meals with Protein , healthy fats and some carbs in the low G.I food group can prevent or reduce weight gain and issues with cholesterol and blood sugars that can be an issue for some with steroid use.

If you note down any changes in a note book , both good and bad , in your first month it is helpful for you to be able to show you Doctor or Specialist to get more advice on specific things. It is also helpful if you make sure that you receive a copy of all Doctors from all of your Specialists , and make sure that a copy of letters from each Specialist is sent to all the Specialists or Doctors that are involved in your treatment for all your different conditions . This means they are all kept in the loop and have full information to make sure that none of your treatments counteract with each other. Also , whenever you see a Specialist do ask the question , will that be ok to take if I have .....? and , will that medication be alright to take with my other drugs?

You also have this forum to come back to at any time if you have questions over the next few weeks , and if you have any concerns with side effects or symptoms on your new medication you can call you GP and ask for a Phone Appointment to discuss it.

Good luck , it will feel a bit scary at first and may take sometime to adjust to but it will get better .

[Libertylane in reply to Blearyeyed]

Thanks. I really don’t have much pain sort of a dull headache on left side some times with little scalp tenderness and maybe ear and throat irritation but it comes and goes so I sometimes question gca so it might be hard to tell if prednisone is working. Hope rheum can sort it out. Thanks so much for tesponse